This report describes our judgement of the quality of care at this location. It is based on a combination of what we found when we inspected and a review of all information available to CQC including information given to us from patients, the public and other organisations Ratings Overall rating for this location Outstanding – Are services safe? Good ––– Are services effective? Good ––– Are services caring? Outstanding – Are services responsive? Good ––– Are services well-led? Outstanding – Overall summary Milton Children’s Hospice is operated by East Anglia's Children’s Hospices (EACH). The service has six single patient rooms and one single bedroom suitable for a baby. Facilities include therapy rooms, a hydrotherapy pool and an education centre. There are facilities on site for families to stay and there are a number of offices, a library and meeting rooms. The service provides a range of physical, emotional, social and spiritual support services including end of life care, symptom management, short breaks, psychological and family therapy interventions. It also provides children, young people and their families with support for emotional, physical health and wellbeing through counselling, music therapy, art therapy, specialist play, hydrotherapy, physiotherapy, occupational therapy, practical help in the family home through the ‘Help at Home service’, spiritual care and family information. Milt Milton on Childr Children' en's Hospic Hospice Quality Report Church Lane Milton Cambridge CB24 6AB Tel: 01223 815100 Website: www.each.org.uk Date of inspection visit: 09 January 2020 Date of publication: 07/04/2020 1 Milton Children's Hospice Quality Report 07/04/2020
Transcript
This report describes our judgement of the quality of care at this location. It is based on a combination of what wefound when we inspected and a review of all information available to CQC including information given to us frompatients, the public and other organisations
Ratings
Overall rating for this location Outstanding –
Are services safe? Good –––
Are services effective? Good –––
Are services caring? Outstanding –
Are services responsive? Good –––
Are services well-led? Outstanding –
Overall summary
Milton Children’s Hospice is operated by East Anglia'sChildren’s Hospices (EACH). The service has six singlepatient rooms and one single bedroom suitable for ababy. Facilities include therapy rooms, a hydrotherapypool and an education centre. There are facilities on sitefor families to stay and there are a number of offices, alibrary and meeting rooms.
The service provides a range of physical, emotional,social and spiritual support services including end of lifecare, symptom management, short breaks, psychological
and family therapy interventions. It also provideschildren, young people and their families with support foremotional, physical health and wellbeing throughcounselling, music therapy, art therapy, specialist play,hydrotherapy, physiotherapy, occupational therapy,practical help in the family home through the ‘Help atHome service’, spiritual care and family information.
The provider, EACH, runs three hospices in East Anglia.The three hospices work very closely together, sharingknowledge and expertise as well as sharing therapy andnursing teams to meet service demand.
We inspected this service using our comprehensiveinspection methodology. We carried out the short- noticeannounced inspection on 9 January 2020.
To get to the heart of patients’ experiences of care andtreatment, we ask the same five questions of all services:are they safe, effective, caring, responsive to people'sneeds, and well-led? Where we have a legal duty to do sowe rate services’ performance against each key questionas outstanding, good, requires improvement orinadequate.
Throughout the inspection, we took account of whatpeople told us and how the provider understood andcomplied with the Mental Capacity Act 2005.
Services we rate
Our rating of this service stayed the same. We rated it asOutstanding overall.
We found outstanding practice in relation to hospice carefor children and young people:
• Staff repeatedly went the extra mile in their care andwere committed to find ways to make a difference tochildren and their families. Staff went above andbeyond expectations to establish and meet patient’sindividual needs and were passionate about the carethey delivered. Staff were highly motivated to offercare that was kind and promoted dignity. Staffrecognised the totality of people’s needs andsupported the emotional needs of children and theirfamilies and children and their families emotional andsocial needs were seen as being as important as theirphysical needs. Relatives felt truly cared for and thatthey mattered.
• Leaders promoted a positive culture where challengewas welcomed. Every member of staff we spoke withtold us they were proud to work for the service andthat the leadership team were accessible,approachable and actively sought their input. Theservice had formed effective working relationshipswith other care providers, local faith leaders,community organisations and charities providingnational guidance. The service had taken a leadership
role in the local healthcare environment to meet theneeds of the local population through thedevelopment of the managed clinical network andhosting the regional palliative care network. Thisensured that the service had strong links with externalstakeholders and influenced decision making in thesector.
We found areas of good practice in relation to hospicecare for children and young people:
• The service had enough staff to care for patients andkeep them safe. Staff had training in key skills,understood how to protect patients from abuse, andmanaged safety well. The service controlled infectionrisk well. Staff assessed risks to patients, acted onthem and kept good care records. They managedmedicines well. The service managed safety incidentswell and learned lessons from them.
• Staff provided evidence-based care and treatment,gave patients enough to eat and drink, and gave thempain relief when they needed it. Managers monitoredthe effectiveness of the service and made sure staffwere competent. Staff worked well together for thebenefit of patients, supported them to make decisionsabout their care, and had access to good information.
• Children’s individual needs and preferences werecentral to the delivery of tailored services. The servicehad developed a truly holistic assessment modelwhich placed children and their families at the centreof care planning. Children and their families wereasked what they wanted to achieve while being underEACH’s care and staff were passionate about ensuringthese goals were achieved and that children and theirfamilies were engaged with the care planning process.The service planned and provided care based onpatient and family needs and had found innovativeways to improve access for non-emergencyadmissions. The service strived to ensure they wereinclusive and welcoming to patients and their familiesfrom all faiths. The service had developed innovativeteams to assist patients in need such as the symptomcontrol team and the long-term ventilator communityoutreach service.
Milton Children’s Hospice is operated by East Anglia’sChildren’s Hospices (EACH). Hospice services forchildren was offered at Milton Children’s hospice.We rated the service as outstanding overall. Theservice was rated outstanding in caring andwell-led, and good in safe, responsive and effective.
Milton Children’s Hospice is operated by East Anglia'sChildren’s Hospices (EACH). It is one of three hospicesoperated by EACH, one in Ipswich and one in Norfolk.EACH provides support for children and young peoplewith life-limiting or life-threatening conditions, and theirfamilies and carers, across the counties ofCambridgeshire, Norfolk, Suffolk and Essex.
Milton Children's Hospice building is an old rectory set onthe outskirts of the village of Milton. The original househas been converted and extended a number of timesover the years. The hospice building offers six singlebedrooms all of which have direct access to bathroomfacilities. There is also a single bedroom suitable for ababy. There are shared areas for relaxation, play and
meals as well as therapy rooms, a hydrotherapy pool andan education centre. There are facilities on site forfamilies to stay and there are a number of offices, a libraryand meeting rooms.
The service provides a range of physical, emotional,social and spiritual support services including end of lifecare, symptom management, short breaks, psychologicaland family therapy interventions. It also provideschildren, young people and their families with support foremotional, physical health and wellbeing throughcounselling, music therapy, art therapy, specialist play,hydrotherapy, physiotherapy, occupational therapy,practical help in the family home through the ‘Help atHome service’, spiritual care and family information.
The hospice has had a registered manager in post sinceJanuary 2018.
Our inspection team
The team that inspected the service comprised a CQClead inspector,two other CQC inspectors, and a specialistadvisor with expertise in children and young people’spalliative care. The inspection team was overseen byFiona Allinson, Head of Hospital Inspection.
Information about Milton Children's Hospice
The service is registered to provide the followingregulated activities:
• Treatment of disease, disorder and injury.
During the inspection, we visited the hospice and itsfacilities, including the care floor, bedrooms, clinic andtherapy rooms, and outdoor facilities. We spoke with 18members of staff, including registered nurses, therapists,support staff, senior managers, the librarian and trustees.During our inspection we spoke with two patients andrelatives and reviewed three sets of patient records andmedication administration records.
There were no special reviews or investigations of thehospice ongoing by the CQC at any time during the 12
months before this inspection. The service has beeninspected four times, and the most recent inspectiontook place in February 2016 which found that the servicewas meeting all standards of quality and safety it wasinspected against.
Activity from October 2018 to September 2019: thehospice provided care to 136 patients under the age of18.
Track record on safety
In the reporting period from October 2018 to September2019:
• The service reported no never events.• The service reported no serious incidents.
The five questions we ask about services and what we found
We always ask the following five questions of services.
Are services safe?Our rating of safe stayed the same. We rated it as Good because:
• The service provided mandatory training in key skills to all staffand made sure everyone completed it.
• Staff understood how to protect patients from abuse and theservice worked well with other agencies to do so.
• The service controlled infection risk well. Staff used equipmentand control measures to protect patients, themselves andothers from infection. They kept equipment and the premisesvisibly clean.
• The design, maintenance and use of facilities, premises andequipment kept people safe. Staff were trained to use them.
• Staff completed and updated risk assessments for each patientand removed or minimised risks.
• The service had enough nursing and support staff with the rightqualifications, skills, training and experience to keep patientssafe from avoidable harm and to provide the right care andtreatment. Managers regularly reviewed and adjusted staffinglevels and skill mix and gave bank staff a full induction.
• Staff kept detailed records of patients’ care and treatment.Records were clear, up-to-date, stored securely and easilyavailable to all staff providing care.
• The service used systems and processes to safely administer,record and store medicines.
• The service managed patient safety incidents well. Staffrecognised incidents and near misses and reported themappropriately. Managers investigated incidents and sharedlessons learned with the whole team and the wider service.When things went wrong, staff apologised and gave patientshonest information and suitable support. Managers ensuredthat actions from patient safety alerts were implemented andmonitored.
However:
• The service had low safeguarding training rates. The servicehad until April 2020 to meet their training targets and told usthat extra study days had been put on to ensure staff would betrained by the target date.
• The service had not had an infection control audit completedas part of their service level contract with a local trust since2017.
Are services effective?Our rating of effective stayed the same.We rated it as Good because:
• The service provided care and treatment based on nationalguidance and best practice. Managers checked to make surestaff followed guidance.
• Staff gave patients enough food and drink to meet their needs.They used special feeding and hydration techniques whennecessary. The service made adjustments for patients’religious, cultural and other needs.
• Staff assessed and monitored patients regularly to see if theywere in pain and gave pain relief in a timely way. Theysupported those unable to communicate using suitableassessment tools and gave additional pain relief to ease pain.
• The service made sure staff were competent for their roles.Managers appraised staff’s work performance and heldsupervision meetings with them to provide support anddevelopment.
• Nurses and other healthcare professionals worked together as ateam to benefit patients. They supported each other to providegood care.
• Staff supported children, young people and their families tomake informed decisions about their care and treatment. Theyknew how to support children, young people and their familieswho lacked capacity to make their own decisions.
Good –––
Are services caring?Our rating of caring stayed the same. We rated it as Outstandingbecause:
• Staff treated children, young people and their families withcompassion and kindness, respected their privacy and dignity,and went above and beyond expectations to meet theirindividual needs and wishes. Children, young people and theirfamilies were truly respected and valued as individuals. Staffwere passionate about delivering care and strived to buildsupportive and trusting relationships with patients and theirfamilies.
• The service provided targeted emotional support to childrenand their families through their extensive wellbeing teamconsisting of counsellors and therapists. Staff providedemotional support to children, young people and their familiesto minimise their distress. They understood children and youngpeople’s personal, cultural and religious needs. People’semotional and social needs were seen as being as important astheir physical needs.
• Staff supported and involved children, young people and theirfamilies to be partners in their care. Staff ensured that theyunderstood their condition and made decisions about theircare and treatment. They ensured a family centred approach.
Are services responsive?Our rating of responsive went down.We rated it as Good because:
• Children’s individual needs and preferences were central to thedelivery of services and managers planned and organisedservices so they met the changing needs of the localpopulation.
• Facilities and premises were innovative and met the needs of arange of children who used the service.
• The service was inclusive and took account of children, youngpeople and their families' individual needs and preferences.Staff made reasonable adjustments to help children, youngpeople and their families access services. They coordinatedcare with other services and providers.
• The service was accessible and promoted equality. The servicechampioned holistic and individualised care for all patients,particularly those who were receiving end of life care.
• People could access the service when they needed it andreceived the right care promptly.
• It was easy for people to give feedback and raise concernsabout care received. The service treated concerns andcomplaints seriously, investigated them and shared lessonslearned with all staff. The service included children, youngpeople and their families in the investigation of their complaint.
However:
• The service had a number of cancellations for planned shortbreaks. Between October and December 2019 there were fourinstances of short-break cancellations by the service. Theservice were in the process of a service-redesign to reduceshort-break cancellations.
Good –––
Are services well-led?Our rating of well-led improved.We rated it as Outstandingbecause:
• We saw that there was compassionate, effective and inclusiveleadership at all levels. Leaders within the servicedemonstrated the high levels of experience, capacity andcapability needed to deliver excellent and sustainable care.There was an embedded system of leadership developmentand succession planning.
• The service had a clear vision for what it wanted to achieve anda detailed strategy to turn it into action, developed with allrelevant stakeholders. The vision and strategy were focused onsustainability of services and aligned to local and nationalplans within the wider health economy.
• Staff felt respected, supported and valued. They were focusedon the needs of children, young people and their familiesreceiving care. The service promoted equality and diversity indaily work and provided opportunities for career development.The service had an open culture where children, young peopleand their families and staff could raise concerns without fear.Leaders had a shared purpose, strived to deliver and motivatedstaff to succeed.
• There were high levels of satisfaction across all staff groups andstaff repeatedly told us that they were proud to work for theservice. Staff we spoke with shared a common focus onimproving the quality and sustainability of care and people’sexperiences.
• Leaders operated effective governance processes, throughoutthe service and with partner organisations. Staff at all levelswere clear about their roles and accountabilities and hadregular opportunities to meet, discuss and learn from theperformance of the service.
• The service had good systems to identify risks, plan to eliminateor reduce them, and cope with both the expected andunexpected.
• The service collected reliable, detailed data and analysed it todrive forward improvements. Staff could find the data theyneeded, in easily accessible formats, to understandperformance, make decisions and improvements. Theinformation systems were integrated and secure. Data ornotifications were consistently submitted to externalorganisations as required.
• There was consistently high levels of constructive engagementwith staff and people who used services, including equalitygroups. Rigorous and constructive challenge from service users,their family and staff was welcomed. The service took aleadership role in its local health system to identify andproactively address challenges and to meet the needs of thelocal population.
• All staff were committed to continually learning and improvingservices. Staff actively shared learning throughout teams. Theyhad a good understanding of quality improvement methodsand the skills to use them. Leaders encouraged innovation andparticipation in research.
Our rating of good stayed the same.We rated it as good.
Mandatory training
The service provided mandatory training in keyskills to all staff and made sure everyone completedit.
Nursing staff received and kept up-to-date with theirmandatory training. The mandatory training wascomprehensive and met the needs of children, youngpeople and staff. The mandatory training includedinfection prevention and control, data security andprotection, fire safety, moving and handling, oxygenmanagement, safeguarding children level 3,resuscitation/anaphylaxis, and food hygiene.
The service’s training programme ran from April until theend of March each year. The service set a target of 90% forthe completion of all mandatory training modules, theservices overall compliance rate across the modules was87% as of January 2020. The service met the 90% targetfor four out of the eight topics which were: Food hygiene,data protection, oxygen management and fire training.
However, the target of 90% was not yet met forsafeguarding children level three (68% overallcompliance rate), infection control (71% compliancerate), Resus/Anaphylaxis (85% compliance rate) andmoving and handling children (85% compliance rate.Leaders within the service told us that staff were on targetto meet the 90% compliance rate by March 2020 and thiswas being achieved by providing more training sessions.
Clinical staff completed training on recognising andresponding to children and young people with mentalhealth needs, learning disabilities and autism. Staffreceived online equality and diversity training.
Managers monitored mandatory training and alerted staffwhen they needed to update their training. The servicesmandatory training compliance levels were reported inthe service’s clinical governance meetings. Staff receivedemail reminders from the education department whentheir mandatory training was due.
Safeguarding
Staff understood how to protect patients from abuseand the service worked well with other agencies todo so. Staff knew how to recognise and reportabuse. However, not all staff had completedmandatory safeguarding training.
There were clear safeguarding processes and proceduresin place for safeguarding vulnerable adults and children.The service’s safeguarding children and young peoplepolicy, dated March 2019 set out responsibilities of staffand contact details of local authority referral. The policyalso covered child sexual exploitation (CSE) and femalegenital mutilation (FGM).
Nursing staff received training specific for their role onhow to recognise and report abuse, however not all staffwere currently up to date with their training. Staffreceived safeguarding training appropriate to their role inline with the intercollegiate document for children andyoung people (2019) and adult Safeguarding (2018): Rolesand Competencies for Health Care Staff.
The service set a target of 90% for completion ofsafeguarding training. At the time of our inspection thedata submitted showed the compliance across each rolewas as follows:
Nursing staff:
• Safeguarding children level 3: 60% (9 out of 15 staff)• Preventing radicalisation training level 3: 53% (8 out of
15 staff)• Adult safeguarding level 2: 6.5% (1 out of 15 staff)
Care assistant staff:
• Safeguarding children level 3: 75% (6 out of 8 staff)• Preventing radicalisation training level 3: 75% (6 out of 8
staff)• Adult safeguarding level 2: 12.5% (1 out of 8 staff)
Other staff (which included therapy staff):
• Safeguarding children level 3: 75% (6 out of 8 staff)• Preventing radicalisation training level 3: 75% (6 out of 8
staff)• Adult safeguarding level 2: 37.5% (3 out of 8 staff)
Volunteers:
• 82% (14 out of 18 volunteers)
Service leaders provided evidence that staff who hadbeen unable to attend safeguarding training had beenbooked onto courses at the organisation’s other sites inFebruary and March 2020 to ensure all staff were fullycompliant by the service’s end of March 2020 deadline.
The service had introduced an e-learning adultsafeguarding training package for staff in January 2020.Senior leaders told us that they have given staff threemonths to complete this training by the end of March2020 deadline.
Staff could give examples of how to protect children,young people and their families from harassment anddiscrimination, including those with protectedcharacteristics under the Equality Act.
Staff knew how to identify adults and children at risk of,or suffering, significant harm and worked with otheragencies to protect them. We saw that safeguardingconcerns were discussed, and reporting was encouragedin the services local multidisciplinary team meetings.
Staff told us that they attended two safeguardingsupervision sessions per year where feedback wasprovided on safeguarding referrals submitted by theservice.
The service had a service level agreement with a localcommunity NHS trust to provide professionalsafeguarding advice and training.
Staff knew how to make a safeguarding referral and whoto inform if they had concerns. Staff told that they wouldspeak to their line manager and the service’ssafeguarding lead if they had safeguarding concerns. Theservice’s safeguarding lead was trained to level 3 insafeguarding children which was the same level as allclinical staff.
Cleanliness, infection control and hygiene
The service controlled infection risk well. Staff usedequipment and control measures to protectpatients, themselves and others from infection.They kept equipment and the premises visibly clean
All areas in the hospice were clean and had suitablefurnishings which were clean and well maintained,including the bedrooms, treatment area, playrooms andbathrooms. However, some of the services bedrooms hadcarpet which are harder to keep clean that hard flooring.We saw that the service had a cleaning schedule for thecarpets and a programme in place to replace them.
Cleaning records were up-to-date and demonstrated thatall areas were cleaned regularly. We
saw that each area had a completed daily, weekly andmonthly cleaning schedule. Cleaning
schedules included soft furnishings, doors, windows,blinds, hard surfaces, toys and equipment.
Staff cleaned equipment after patient contact andlabelled equipment to show when it was last cleaned.Staff used ‘I am clean’ stickers to indicate that equipmentand rooms had been cleaned. Staff told us that they triedto clean toys after every patient contact in addition tohaving a cleaning schedule for all toys.
The service had no incidences of healthcare acquiredinfections in the last 12 months. The hospice had a localinfection control lead, as well as an infection controlspecialist adviser, which was provided under a servicelevel agreement (SLA) with a local NHS trust. We saw
under this agreement; the service undertook infectioncontrol audits of the service. We reviewed the results ofan audit from 2017 and saw the service performed wellfor cleanliness and actions were put in place to addressareas of non-compliance. We were however concernedthat no repeat audit had been completed since 2017.
We reviewed the results of the services latest handhygiene audits from November to December 2019 inwhich the service performed well. All staff were seen towash their hands when necessary in accordance with theWorld Health Organisation (WHO) Five Moments for HandHygiene guidance.
Staff followed infection control principles including theuse of personal protective equipment (PPE). We saw stafffollowed hand hygiene best practices, such as remaining'bare below the elbow' and washing hands after eachepisode of patient care.
Environment and equipment
The service had suitable facilities to meet the needs ofchildren and young people's families. The service hadconsidered the age range and cognitive abilities ofchildren and young people being cared for in the hospicewhen designing the environment and facilities. Theservice had a separate room for teenagers with access tostate-of-the-art gaming technology and had a largesensory room with a range of equipment to suit differentcognitive abilities.
The service ensured children staying overnight were keptsafe. The service used 'safe-space' cots and beds thatlowered to the floor so that children who were at risk offalls during the night were protected.
The service had enough suitable equipment to help themto safely care for children and young people. Eachinpatient bedroom was equipped with suitableequipment and had access to a bathroom. There wassuitable hoisting equipment available for children andyoung people who required assistance to transferthroughout the building including in the pool areas,bedrooms, bathrooms, therapy rooms and the “teenagersden”. The service had adaptable baths and shower roomsto ensure that children and their families could wash withease.
Staff carried out daily safety checks of specialistequipment. During our inspection we checked
resuscitation equipment and saw this was checked in linewith policy. Emergency grab bags were easily accessible,and all consumable items contained in them were indate.
There were processes in place to ensure that equipmentwas maintained and serviced. We checked a number ofpieces of electrical equipment and all had evidence ofelectrical safety testing and maintenance testing. We sawthat the service kept an electronic database ofequipment with servicing compliance details.
Staff disposed of clinical waste safely. The service had awaste segregation system in place and we found separatebins and bags in place throughout outpatient clinics. Staffdisposed of waste appropriately and followed the policythat was in place. Sharps bins were correctly assembled,dated, labelled and not overfilled.
Staff stored control of substances hazardous to health(COSHH) materials appropriately in locked cupboardswhich ensured patients and the public could not accesssubstance.
The design of the environment followed nationalguidance. The environment had been designed withpatients and their families in mind. The art therapy roomcould be accessed without entering the care floor so thatpatients and their families could use the room discretely.The care floor had step free access and had been built toensure easy access for wheelchair users.
Access to the hospice was via secure key card access,which restricted access to facilities, particularly overnightwhen there was limited reception staff.
Assessing and responding to patient risk
Staff completed and updated risk assessments foreach child and young person and removed orminimised risks. Staff identified and quickly actedupon children and young people at risk ofdeterioration.
Staff completed risk assessments for each patient onadmission, and reviewed this regularly, including afterany incident. There was effective risk assessment, actionplanning and reviews in place for children and youngpeople. Staff completed risk assessments for each patienton admission and reviewed them regularly.
Comprehensive risk assessments were carried out for allpatients and care plans were in place for each child oryoung person. Risk assessments included skin integrity,pressure ulcers and falls.
A holistic need assessment (HNA) was completed for eachindividual patient, and this was reviewed annually or ifthere was a significant change. All patients were reviewedby a multi-disciplinary team (MDT).
Staff could access patient’s electronic records which werecompleted contemporaneously and allowed for alerts tobe put in place for key safety issues for example if apatient had any allergies or safeguarding concerns.
Staff shared key information to keep patients safe whenhanding over their care to others, including between eachshift. Shift changes and handovers included all necessarykey information to keep patients safe. We attended theservices daily stand up session where staff discussed theiravailability, key events and the planned care of each childor young person. This meeting was attended by all staffincluding nurses, therapy staff and clinical nursespecialists. Following the stand-up session there was adaily planning meeting attended by the multidisciplinaryclinical team. This meeting discussed the children andyoung people’s clinical care in detail and assignedactions to staff.
We saw that staff undertook a comprehensive andholistic review of the needs of children and young peopleduring the daily planning meeting. Staff told us that thismeeting could occur at the bedside if the child or youngperson or their relatives wanted to be involved with dailycare planning.
Staff knew about and dealt with any specific risk issues.Staff identified and responded to changing risks tochildren and young people receiving end of life care byhaving members of the services symptom control teamperform daily reviews. Children receiving end of life carereceived a review weekly by the services managed clinicalnetwork consultant.
Staff had access to 24-hour support if they had concernsover a child's care, including concerns over their mentalhealth. Staff could receive medical advice out of hoursthrough the organisations managed clinical network.
In the event of a transfer to hospital patients wereaccompanied by a member of staff in the ambulanceuntil a family member was able to attend.
Nurse staffing
The service had enough nursing staff with the rightqualifications, skills, training and experience tokeep children, young people and their families safefrom avoidable harm and to provide the right careand treatment. Managers regularly reviewed andadjusted staffing levels and skill mix, and gave bankand agency staff a full induction.
The service had enough nursing staff and support staff tokeep children and young people safe. Staff told us thatthey felt they had enough time to spend with theirpatients and that staffing levels were safe. Managersorganised staffing to ensure that end of life care wasdelivered as a priority. The staffing establishment wascalculated to ensure there was a minimum of two nursingcare staff per shift in the hospice building including aminimum of one registered nurse.
Managers accurately calculated and reviewed thenumber and grade of nurses, nursing assistants andhealthcare assistants needed for each shift in accordancewith national guidance. The service reviewed staffinglevels and short break bookings daily at the service’sstand up sessions prior to handover. Staff resource issuesacross the three hospice locations were consideredweekly by the central panel meeting and the localitymulti-professional meetings (LMPM) and tri-site meetingswere arranged to organise cover for staffing across thelocations when needed.
The service organised staffing to ensure that end of lifecare delivery was a priority. This meant that at times shortbreaks were postponed to ensure that end of life carepatients received safe care.
When the hospice buildings were closed staff wereallocated to a ‘standby’ rota in the event of urgentlyneeding to open the building for end of life care. Nursingcare staff were also allocated to an ‘on-call’ rota whenthere was end of life care needed in patient’s homes.
The service had low and/or reducing vacancy rates. Theservice had a vacancy rate of 5.7 whole time equivalents(WTE) for registered nursing staff. The vacancies weremanaged by utilising the services pool of bank staff.
Service leaders told us that they had a rolling advert outto fill these roles on a number of different forums but theystruggled to fill registered nursing vacancies due thelocation of the hospice. The hospice was in an area wherehousing was typically more expensive than other hospicesites and there were competing for staff with largehospital trusts nearby.
The service ensured that they would only operate whenthere were sufficient staff numbers to ensure patientsafety. The service had two unplanned closures betweenOctober and December 2019 due to staff shortages/sickness. Leaders told us that they prioritised end of lifecare and would prevent closures of services wherechildren or young people were receiving end of life care.Closures would be prevented from utilising staff fromother hospice sites.
Managers limited their use of bank and agency staff andrequested staff familiar with the service. The service had asmall pool of bank staff which consisted of four registerednurses and one healthcare assistant. All bank staff wereoffered regular shifts equating to 7.5 hours a month togive them the opportunity to be familiar with the serviceand ensure their competencies were up-to-date. Theservice had not used any agency staff from October 2018to September 2019.
Managers made sure all bank staff had a full inductionand understood the service. There was an inductionprogramme in place for all new bank staff. Managers toldus bank staff that worked in the hospice worked regularshifts and were familiar with the processes andprocedures.
The service had a sickness rate of 3.4% for registerednurses for the period July 2019 to September 2019.
Medical staffing
The service did not have any medical staff directlyemployed by the organisation. The service had access togeneral medical advice through a service level agreementwith a local GP surgery.
Medical advice and support was provided out of hoursthrough the services managed clinical network. Themanaged clinical network was hosted by EACH andprovided access to specialist palliative care advice. Theteam consisted of children’s palliative care trainedconsultant paediatricians and nurse consultants.
Records
Staff kept detailed records of children and youngpeople's care and treatment. Records were clear,up-to-date, stored securely and easily available toall staff providing care.
Patient notes were comprehensive, and all staff couldaccess them easily. We reviewed three sets of patientrecords and saw that patient records were clear,comprehensive and provided a detailed record of thechild or young persons care. Records covered a patient'semotional, social, spiritual, physical health, mentalhealth, learning disability, and behavioural needs.Records contained, where relevant, patient painmanagement plans, patient-specific information such ashealth passports, advance care plans, end of life plans,advance directives, and risk assessments.
Patient holistic need assessments (HNAs) werecomprehensive, thorough, patient-centred andcompleted to a high standard. These included patientpreferences, social and psychological needs of the family,as well as wider family goals and wishes. We saw theservice reviewed all HNAs with each family, and reviewedthe progress of any previously agreed goals annually or ifthere are any significant changes with the child or family.
Records were stored securely and when children andyoung people transferred to a new team, there were nodelays in staff accessing their records. The service usedan electronic records system that was used widely acrossprimary care services in the region. The system allowedthe patient’s GP to see the hospice entries includingclinical updates, symptom management and advancecare plans if the GP service also used the same system.The service shared updates and records with otherproviders as appropriate through secure email or postwhere providers did not have access to the electronicrecords system.
Medicines
The service used systems and processes to safelyprescribe, administer, record and store medicines.
Staff followed systems and processes when safely,administering, recording and storing medicines. Theservice stored all medicine in a locked clinic room, whichauthorised staff had access to.
The service did not keep a large stock of medicines. Theservice only kept a stock of common home remedies,such as paracetamol. All patients would come with asupply of all their prescribed medicines. The service hadappropriate facilities for storing patient’s own supplies ofmedicines. We saw staff stored each child's medicines inseparate, clearly labelled boxes, and secured these in adedicated cupboard with access restricted to the nursingteam.
Staff stored and managed medicines and prescribingdocuments in line with the provider’s policy. We reviewedthree patient medication administration records and sawthat these were completed in line with the providerspolicy.
Staff followed current national practice to check patientshad the correct medicines. Controlled drugs areprescription medicines that are controlled under theMisuse of Drugs legislation (and subsequentamendments). The service had a controlled drugsaccountable officer and a service lead for the safe andsecure handling of medicines. The service did not holdstocks of any controlled drugs, however had appropriatestorage arrangements and records to safely store when achild attended the service with controlled drugs. Wereviewed the storage of a patient’s controlled drugsduring our inspection and saw that these were stored anddocumented in line with legislation.
Registered nurses and healthcare assistants withadditional training administered controlled drugs andhad assessed competencies to do so. The services Matronand clinical nurse specialists were available to checkdoses and administration of controlled drugs.
Staff reviewed patients' medicines regularly and providedspecific advice to patients and carers about theirmedicines. On admission staff completed a medicinesreconciliation form for patients which was then checkedby a second member of staff for accuracy and signed. Theservice had an arrangement with a local pharmacy toprocure prescription medicines. Specialist pharmacistadvice and support was sought from the local communityNHS trust through a service level agreement (SLA).
Should the service need medicines prescribed theservices Consultant nurse and Matron were non-medicalprescribers. This meant that patients received theappropriate prescription without any delay.
Staff monitored the temperatures of treatment roomsand medicines fridges daily. We saw that anytemperatures which exceeded policy were escalated tosenior staff to rectify.
The service had systems to ensure staff knew aboutsafety alerts and incidents, so patients received theirmedicines safely. There was a system in place to ensurethat medicines alert or recalls were actionedappropriately. A medicines management group metregularly to discuss any medicines incidents which hadbeen reported. These were reviewed and monitored, sothat lessons could be learnt, and improvements made ifnecessary. All medicines information was circulated tostaff via a newsletter 'Medicine Matters'.
Incidents
The service managed patient safety incidents well.Staff recognised and reported incidents and nearmisses. Managers investigated incidents and sharedlessons learned with the whole team and the widerservice. When things went wrong, staff apologisedand gave children, young people and their familieshonest information and suitable support. Managersensured that actions from patient safety alerts wereimplemented and monitored.
Staff knew what incidents to report and how to reportthem and reported incidents clearly and in line withpolicy. Staff told us they reported incidents using theservices electronic reporting system. The electronicsystem notified service mangers who could proceed toinvestigate.
The service reported no never events or serious incidentsfrom October 2018 to September 2019. A ‘never event’ is aserious patient safety incident that should not happen ifhealthcare providers follow national guidance on how toprevent them. Each never event reported type has thepotential to cause serious patient harm or death butneither need have happened for an incident to be a neverevent. Staff we spoke with were aware of what incidentswould constitute a never event or serious incident andhow to report them should they occur.
Managers investigated incidents thoroughly. Children,young people and their families were involved in these
investigations. Staff told us that they were encouraged totake part in incident investigations. Patients families wereencouraged to be involved in the incident investigationprocess, where appropriate.
Staff understood the duty of candour. They were openand transparent, and gave children, young people andtheir families a full explanation if and when things wentwrong. The service had a duty of candour policy datedAugust 2018. We reviewed the policy and saw that it wascomprehensive, in date and referenced nationalguidelines and policy. Staff were aware of the policy andspoke about the importance of being open and honestwhen something went wrong.
Staff met to discuss the feedback and look atimprovements to children and young people’s care. Wesaw that incidents were discussed as an agenda item inthe service’s locality multi-professional meeting (LMPM).In this meeting we could see examples of actions andimprovements taken following incidents including issuinga leaflet to parents to ensure medicines were correctlylabelled prior to an admission.
There was evidence that changes had been made as aresult of feedback. For example, staff told us of a changeto the process for checking medicines in and out,because of a previous incident.
Are hospice services for childreneffective?(for example, treatment is effective)
Good –––
Our rating of effective stayed the same.We rated it asgood.
Evidence-based care and treatment
The service provided care and treatment based onnational guidance and evidence-based practice.Managers checked to make sure staff followedguidance. Staff protected the rights of children andyoung people subject to the Mental Health Act 1983.
Staff followed up-to-date policies to plan and deliver highquality care according to best practice and nationalguidance. The service had an extensive library. The
service’s librarian reviewed best practice journals andshared relevant information on national guidanceupdates to clinical staff. The librarian ensured that all newand reviewed policies were in line with national guidanceby reviewing articles, guidelines and book chapters. Wereviewed several of the services policies and saw thatthey referenced national guidance, reflected best practiceand were within their review date.
The services library and information service was used byother services nationally and had an extensive range ofpeer reviewed journals, relevant articles and bookswritten on areas such as end of life care, grief and siblingsupport. The services librarian produced a monthlybulletin that was sent to all staff which focussed onspecific topics and articles that staff would find helpfuland to share best practice in the sector. These bulletinswere shared with other services if they were members ofthe EACH library ensuring that best practice and learningwas shared across the health sector. The service’s libraryparticipated in Health Education England’s NHS librarybenchmarking scheme. The provider’s library scored 90%for 2019 when benchmarked against NHS libraries.
The service ensured it was following the Every MomentMatters guidance by the National Council for PalliativeCare, published in March 2015 by ensuring that patientswere supported to make advance care plans anddirectives. These ensured that children and young peoplereceived the care and treatment they wanted when theywere no longer able to contribute.
The provider influenced national policy and legislationchanges by proactively working with national charitieswho set standards and guidance for the sector. Staffwithin the service were frequently invited to speak atnational events and advise other services on bestpractice.
The service was actively engaged in several researchprojects and had a comprehensive research programmeand plan. The service had conducted a study ondelivering long term ventilation (LTV) for children andyoung people in a hospice. The study was looking at theLTV practice standards and as a result developed anddelivered a training model project.
The service had also conducted a study in buccal opioiduse for pain and dyspnoea (difficult or labouredbreathing) for children with palliative care needs during
end of life care. The study was assessing theeffectiveness, advantage and disadvantage of buccalopioid for breakthrough pain and dyspnoea in end of lifecare. Buccal administration involves placing a drugbetween the gums and cheek, where it dissolves and isabsorbed into the blood stream.
At handover meetings, staff routinely referred to thepsychological and emotional needs of children, youngpeople and their families. Staff talked about ensuring thechild’s voice is heard during handover meetings andreferenced their psychological as well as physiologicalneeds. The service had holistic needs assessments andcare plans in place that addressed the psychological andemotional needs of patients and their families.
Nutrition and hydration
Staff gave children, young people and their familiesenough food and drink to meet their needs andimprove their health. They used special feeding andhydration techniques when necessary. The servicemade adjustments for children, young people andtheir families' religious, cultural and other needs.
Staff made sure children, young people and their familieshad enough to eat and drink, including those withspecialist nutrition and hydration needs. Each child oryoung person had a comprehensive nutrition care plan intheir electronic patient record. We saw that these wereregularly reviewed. This covered all nutrition andhydration needs, including any allergies, preferences,method of eating and drinking, and desired quantities.
We saw that nutritional needs were discussed withchildren or young people and their families approachingthe end of life in line with the National Institute for Healthand Care Excellence Guidance, NG61.
The hospice worked with dieticians in the NHS when achild had been prescribed nutritional supplement plans.
The hospice had children and young people using theirservices who had different feeding devices. The servicehad standard operating procedures in place to ensurefeed was delivered safely and the service ensured staffwere competent in using different devices.
The services catering team prepared freshly made mealson-site and provided children and their families with hot
and cold food options. The patient’s nutritional planswere shared with the catering team who catered for alltypes of dietary requirements including vegetarian,vegan, soft, gluten free and religious requirements.
Pain relief
Staff assessed and monitored children and youngpeople regularly to see if they were in pain, and gavepain relief in a timely way. They supported thoseunable to communicate using suitable assessmenttools and gave additional pain relief to ease pain.
Staff assessed children and young people's pain using arecognised tool and gave pain relief in line with individualneeds and best practice. Staff used pain scores withchildren and young people to determine if they requiredpain relief. For children and young people withcommunication difficulties, staff supported them tocommunicate with communication aids.
We saw in the records we reviewed that each child oryoung person had a pain assessment and managementplan in place. Additionally, the service ensured that thechild and young person had access to non-medical painrelief including using hydrotherapy and physiotherapytechniques to alleviate pain.
The service managed the pain of children and youngpeople who were approaching the end of their life byensuring they were reviewed regularly by the service’ssymptom management team. The service’s nurseconsultant and the managed clinical networks consultantreviewed end of life care children and young people on aweekly basis, including those who wished to be cared forat home.
Children and young people received pain relief soon afterrequesting it. Relatives we spoke with told us that staffalways responded quickly if a child or young person wasin pain. We saw that administration was recorded in atimely manner on the medicines administration chartswe reviewed.
Patients were required to attend the hospice with theirown medicines as the service did not routinely stock alarge range of medicines. The service did hold a supply ofcommon pain relief medicines including paracetamoland ibuprofen.
If a child or young person required different medicine ortheir supply had run out, the service had developed aservice level agreement with a local GP and anarrangement with a local pharmacy service to obtainmedicines. The service had a service level agreement inplace with a local trust to obtain specialist advice formedicines.
Patient outcomes
Staff monitored the effectiveness of care andtreatment. They used the findings to makeimprovements and achieved good outcomes forchildren and young people.
Managers and staff carried out a comprehensiveprogramme of repeated audits to check improvementover time. Audits included documentation, medicationmanagement and hand hygiene. We saw that auditoutcomes were reviewed by clinical staff and seniorleaders and associated action plans were monitored anddiscussed at the quality and safety group meetings.
Managers and staff used the results to improve childrenand young people's outcomes. The service used patientand family reported outcome measures to improveservices. During our inspection, we reviewed two internalaudit reports, a controlled drugs procedures audit fromMay 2019 and a nutrition care plan audit from November2019. We saw that each report showed the serviceperformed well in these areas as well as identifying areasfor improvement. The audits had detailed action planswhich had actions assigned to named members of staff.Each audit contained a re-audit date for when the auditrequired repeating. The service reported the results ofaudits and progress with their associated action plans atthe quality and safety group meetings.
The services therapy team set therapeutic goals forpatients and reviewed these regularly.
Competent staff
The service made sure staff were competent for theirroles. Managers appraised staff’s work performanceand held supervision meetings with them to providesupport and development.
The clinical educators supported the learning anddevelopment needs of staff. The organisation had aneducational lead and individual clinical educators for
each site. The service’s clinical educators identifiedspecific training needs the teams had and providedspecialist training to support this. This includedcontacting the local trust’s diabetes nurse to providetraining as a new patient with an insulin pump was beingtreated within the service. Specialist study days hadtaken place for long-term-ventilation, femalecatheterisation and subcutaneous injections.
Staff were experienced, qualified and had the right skillsand knowledge to meet the needs of children, youngpeople and their families.
Managers gave all new staff a full induction tailored totheir role and their experience before they started work.Each new starters skills and experience were assessed inorder to build an individualised induction programme.Care staff were supernumerary for the first four weeks oftheir role to allow them to observe staff and have theircompetencies signed off. All new staff were allocated amentor and met with their supervisor bi-monthly toensure they were supported in their new role.
Managers supported staff to develop through yearly,constructive appraisals of their work. The serviceprovided data that showed that as of September 2019100% of nursing staff, allied healthcare professionals,healthcare assistants and other non-qualified staff hadreceived an appraisal in the previous 12 months.
Managers supported nursing staff to develop throughregular, constructive clinical supervision of their work. Allclinical staff had quarterly supervision meetings withtheir manager in addition to their annual appraisal.
Managers made sure staff attended team meetings orhad access to full notes when they could not attend. Theservice held four annual away days for teams whereinformation on complaints, incidents and bespoketraining was provided.
Managers identified any training needs their staff had andgave them the time and opportunity to develop theirskills and knowledge.
Staff had the opportunity to discuss training needs withtheir line manager and were supported to develop theirskills and knowledge. Training needs were discussed aspart of annual appraisals and quarterly supervision. Onemember of staff told us that the appraisal process hadhelped them transition into an educational role.
Managers made sure staff received any specialist trainingfor their role. A member of staff told us how the servicehad supported them to enhance their skills and funded afoundation course on hydrotherapy. The service includeda whole day of training on end of life care as part ofmandatory training to ensure all staff were able to meetthe end of life care needs of patients. This includedtraining by local funeral directors and morticians toensure that staff understood every part of a patients endof life care.
Managers identified poor staff performance promptly andsupported staff to improve. Staff told us that performancewould be discussed as part of their supervision meetingsand that if there were performance issues identified thenstaff would be supported with additional training andmentor support.
Managers recruited, trained and supported volunteers tosupport children, young people and their families in theservice. Volunteers completed a two-day training andinduction programme, which covered topics includingsafeguarding, information governance, manual handling,bereavement support and palliative care awareness, aswell as a tour of the hospice's facilities. Managerssupported all volunteers in their role and undertook aminimum of four supervised shifts with each volunteer,each year.
Multidisciplinary working
Nurses and other healthcare professionals workedtogether as a team to benefit children, young peopleand their families. They supported each other toprovide good care.
Staff held regular and effective multidisciplinary (MDT)meetings to discuss children and young people andimprove their care. The services staff were committed toworking collaboratively and demonstrated a holisticapproach to planning people’s care during weekly MDTmeetings. We saw that these meetings were wellattended and had representation from nursing andtherapy teams.
The service worked alongside the doctors in themanaged clinical network who provided expert advicewhen required.
The service held multi-professional reflective practicegroups where staff presented topics which werediscussed by the group. The group allowed staff to view atopic from different multi-professional perspectives.
Staff worked across health care disciplines and with otheragencies when required to care for children, youngpeople and their families. Staff we spoke with told us theyfelt the service had a truly multidisciplinary approach andspoke about how they worked closely with differenthealthcare professionals including physiotherapists,occupational therapists, art therapists and nurses.
We saw the service had developed effective workingrelationships with other healthcare providers,
including local NHS acute trusts and community trusts,GP surgeries, social services and other hospices.Physiotherapists and occupational therapists told us howthey work closely with NHS community therapists toensure they were providing therapy that the communityphysiotherapists couldn’t and that the therapycomplimented that which was already received. Themusic therapists told us that they work with supportnetworks in schools to determine how they can bestsupport patients and their siblings.
The services lead arts therapist provided examples ofclose working with external agencies including workingclosely with a school’s special educational needsco-ordinator to help a profoundly disabled childcommunicate through chiming. Staff told us aboutphysiotherapists working with the long-term ventilationteam to help children and young people havehydrotherapy sessions.
Seven-day services
Key services were available seven days a week tosupport timely patient care.
Staff could call for support from doctors and otherdisciplines, 24 hours a day, seven days a week. TheProvider’s clinical management network provided out ofhours advice and support. The hospice had developed aservice level agreement with a local GP surgery to providestaff and families with specialist medical advice orreviews when necessary.
Service leaders planned service provision to meet theneeds of patients. The service prioritised end of life careand ensured that a provision of 24 hours a day of care,seven days a week could be provided in the event of achild needing end of life care.
Symptom management advice was provided 24 hours aday, seven days a week, by the Symptom ManagementNursing Service.
Staff had access to a safeguarding advice line, which wasavailable 24 hours a day, seven days a week, should theyrequire specialist safeguarding advice.
Health promotion
Staff assessed each child and young person’s healthwhen admitted. The service completed a holistic needsassessments (HNA) for every child and family referred.This looked at the patient’s clinical condition in additionto the family’s overall wellbeing. The service had moretargeted wellbeing assessments for families and childrenwho raised concerns around wellbeing as part of theirHNA. Referrals to appropriate therapies were discussed atthe services locality multi-professional meeting (LMPM)and systemic meeting.
The service had relevant information promoting healthylifestyles and support. The service offered a range ofsupport to meet the wellbeing needs of patients andfamilies. Emotional and wellbeing support includedsocial opportunities for families to come together andmeet others, for example at sibling activity days, coffeemornings and male/female carers nights. The serviceprovided patients and their families goal-based therapysupport through counsellors, music therapists, arttherapists, play specialists and spiritual care advisors.
There were health promotion materials displayedthroughout the hospice which signposted children oryoung people and their families to support services andcharities.
Consent and Mental Capacity Act
Staff supported children, young people and theirfamilies to make informed decisions about their careand treatment. They knew how to support children,young people and their families who lacked capacityto make their own decisions or were experiencingmental ill health.
Staff understood how and when to assess whether a childor young person had the capacity to make decisionsabout their care. Staff we spoke with understood theimportance of consent when delivering care andtreatment to children and young people. We observedstaff seeking consent from children and young peopleprior to examination, observations and delivery of care.
Staff understood how and when to assess whether a childor young person had the capacity to make decisionsabout their care. When children, young people or theirfamilies could not give consent, staff made decisions intheir best interest, taking into account their wishes,culture and traditions. Nurses we spoke with understood'Gillick competence' (a term used in medical law todecide whether a child under 16 years is able to consentto their own medical treatment, without the need forparental permission or knowledge).
Staff clearly recorded consent in the children and youngpeople's records. We saw consent was documented inpatient records for medical interventions.
Mental Capacity Act and Deprivation of Libertytraining completion
Staff received and kept up to date with training in theMental Capacity Act and Deprivation of LibertySafeguards. Staff received Mental Capacity Act andDeprivation of Liberty Safeguards training. As part of themandatory training staff completed modules on mentalhealth, consent, safeguarding, best interests’ decisionsand deprivation of liberty. Care and nursing staffcompleting level three face-to-face training and seniormanagers completed level four training on the MentalCapacity Act and Deprivation of Liberty Safeguards. Allother staff who had contact with children or youngpeople and their families completed level twoface-to-face training.
The service had educational resources to support themwith their decision making for deprivation of libertysafeguards. There was an eLearning module and policiesand procedures for staff to follow should either astandard or urgent authorisation need to be made.
There were no occasions in the past year where anapplication had been made to deprive a young person oftheir liberty.
Our rating of caring stayed the same.We rated it asoutstanding.
Compassionate care
Staff treated children, young people and theirfamilies with compassion and kindness, respectedtheir privacy and dignity, and went above andbeyond expectations to meet their individual needsand wishes. Children, young people and theirfamilies were truly respected and valued asindividuals. Staff were passionate about deliveringcare and strived to build supportive and trustingrelationships with patients and their families.
Feedback from people who used the service, those closeto them and stakeholders was positive. Relatives told usthat staff went the extra mile and that the care providedexceeded their expectations. We spoke with one relativeon the day of our inspection who told us that they couldnot believe all the effort staff had gone to for them andthat they had felt like part of the EACH family from dayone.
On the day of our inspection we saw staff going the extramile by making arrangements for a vow renewalceremony for the relatives of one of the children at thehospice. Relatives of the child told us that they hadwanted to renew their vows as the child hadn’t been attheir wedding and felt they were missing from thepictures. Staff within the service had sourced volunteerprofessionals from local businesses to ensure the family’sday was special. This included sourcing local florists, aphotographer, hairdresser and Celebrant. Staff haddecorated the care floor with flowers, electric candles,bunting and chair covers. The service’s kitchen staff hadmade and decorated a cake for the occasion. The childwanted the renewal to be star themed, so staff had founddifferent ways to incorporate stars within the decorationsincluding decorating the child’s wheelchair with stars andlining the aisle with stars.
Staff were highly motivated to offer care that was kindand promoted people’s dignity. We saw that staffconsistently put the patient and their family’s needs at
the forefront of care. Staff were discussing the vowrenewal during the daily handover and were keen toensure that support was provided to the family followingthe renewal. Staff were aware that the family had beenexcited for the service and wanted to ensure additionalsupport was put in place the days after the service in casethe family experienced a come down of emotions. Weobserved staff discuss different members of the familyand how best to support them as individuals followingthe renewal.
Other examples of staff going the extra mile includedorganising a magic circle magician to perform for a childat the end of their life, Walt Disney to send arepresentative with an advance copy of the new MaryPoppins film so a child could view it before they died andtwo young people to go ice skating in their wheelchairsfor the first time. The service organised an annual festivalcalled EACH Fest where they had musicians perform,silent discos and entertainers.
The service offered a ‘help at home’ volunteer service,where families could receive help and support with avariety of tasks, including everyday household chores likeshopping, cleaning, gardening, decorating or help tomove home.
Relationships between people who used the service,those close to them and staff were strong, caring,respectful and supportive. One relative told us that staffwere fantastic, had made them and their family feel sowelcome and that they had felt comfortable living in thehospice for an extended period of time while their childwas being cared for. Staff were visibly excited andcompassionate when discussing ways they try to meetindividual needs of children and young people andensured that they enjoyed their interactions with theservice.
Leaders within the service promoted strong, respectfuland caring relationships between staff and patients andtheir families. Staff told us that they were encouraged toget to know patients and their families as individuals andwe saw that staff were praised for building supportiveand trusting relationships with children and their families.We observed that staff were praised through exceptionalreporting in the service’s locality multi-professionalmeetings (LMPM) for getting patients and their families toopen up about their needs so that appropriate care plansand therapy input could be put in place.
Staff recognised and respected the totality of people’sneeds. Staff tried to ensure they offered person-centredcare and support to patients and their families. We sawthat discussions on different ways of helping familieswere encouraged in the services localitymulti-professional meetings. For example, staff suggestedoffering overnight accommodation at the service to afamily whose child was being treated at a nearby trust.The family did not live close to the trust so would benefitfrom having somewhere to stay locally.
Children and their families emotional and social needswere seen as being as important as their physical needs.Staff completed holistic needs assessments (HNA’s) forevery child and their family which detailed the socialneeds and emotional impact the child’s condition washaving on the family. Staff within the service werepassionate about ensuring that children and theirfamilies social and emotional needs were met and weregiven the time to discuss these at length to find solutionswith the multidisciplinary team at the service’s LMPM andsystemic meetings.
Staff were discreet and responsive when caring forchildren, young people and their families. Staff took timeto interact with children, young people and their familiesin a respectful and considerate way. Staff werecompassionate when discussing children in their careand spoke highly of all children in their care. Allinteractions we observed between staff and patients andtheir families were respectful and demonstrated kindnessand compassion. Staff had built a strong rapport withpatients and their relatives. One relative we spoke withtold us they were overwhelmed by the care and loveshown to their family by staff.
Children and young people who had died at the serviceor who died in the community or local neonatal unitwould continue to be cared for with dignity and respectwhilst awaiting funeral arrangements. Families couldspend time with their loved ones after they had died in aprivate space and the service accommodated familieswho wished to have their child stay at the hospice untiltheir funeral by using specialist cooling equipment.
Emotional support
The service provided targeted emotional support tochildren and their families through their extensivewellbeing team consisting of counsellors and
therapists. Staff provided emotional support tochildren, young people and their families tominimise their distress. They understood childrenand young people’s personal, cultural and religiousneeds. People’s emotional and social needs wereseen as being as important as their physical needs.
The service was truly holistic. Staff ensured theysupported the patient and their family as a whole at everyavailable opportunity. Children and their family’sindividual needs and preferences were always reflected inhow care was delivered. The services holistic needsassessment (HNA) included sections on the psychologicalwellbeing of the family and spiritual needs. We viewedcompleted HNAs and saw that this section was detailedand looked at the children and young person, theirsiblings, parents and wider family members anddiscussed their emotional needs.
The service had created a “six-step assessmentpsychological assessment” to assess the psychologicalneeds of families and to determine input from theservices wellbeing team. The assessments werediscussed at weekly “systemic” meetings where thetherapy team would discuss their needs and allocatetherapy support. The service offered a range of therapysupport to children and their families includingcounselling, group sessions, art therapy, play specialists,bereavement support and music therapy.
The service supported innovative techniques to provideemotional support and had recently introducedhypnotherapy sessions for children and their relativeswith plans to increase sessions.
Staff always took children’s personal, cultural, social andreligious needs into account, and found innovative waysto meet them. The service ensured that children and theirfamilies religious needs were met by the team of chaplainand faith leaders available to support families 24 hours aday, seven days a week. The service had engaged withreligious groups within the community to ensure thatservices delivered could be aligned to religious traditionsand that support could be offered from different faithgroups.
Staff recognised that children and their relatives neededto have access to and link with their support networks inthe community and supported children to do this. Staffwithin the service were aware that children living with life
limiting illnesses could experience social isolation andplanned services to ensure that siblings and children’sfriends and peer group could attend the hospice and takepart in sessions. Staff were aware that as children gotolder their social needs may change and tried to ensurethat there were designated spaces for children tosocialise and interact with their peer groups that wereage appropriate, such as the teenage den. The serviceorganised specific events to try and ensure children’ssupport networks were encouraged and supported suchas pizza and gaming nights.
We saw feedback from a bereaved parent that spokeabout how they appreciated that their network of familyand friends were welcomed into the hospice while theirchild was receiving end of life care. They said thesensitivity of staff and the opening of the hospice to allthose who that the family wished to be involved madethe difficult time bearable.
Staff gave children, young people and their families help,emotional support and advice when they needed it.Relatives and patients valued their relationships with staffand felt they often went the extra mile for them whenproviding care and support. Relatives we spoke with toldus how the service made sure they supported all themembers of the family and gave examples of howchildren siblings had been supported with art therapyand how staff had taken the time to get to know siblings’preferences and worked around them. For example, onesibling didn’t like to be asked questions, so staff would tryand ensure the sibling was being supported withoutasking him direct questions. Relatives felt truly cared forand that they mattered.
The service ensured that support was provided tofamilies after a child had died. For example, we saw themultidisciplinary team discussing providing furthertherapy support to a bereaved sibling for an extendedperiod after the child had died. The service hosted anannual memory day which offered bereaved families theopportunity to come to the hospice and celebrate thechild that had died. The service additionally offeredfamilies to come to the service and celebrate their childor young person on marked occasions such as theanniversary of their death or birthdays.
We saw that staff signposted to other organisations andlocal charities that could provide additional support topatients and their families. Staff were passionate aboutensuring families accessed all the support that wasavailable to them.
Staff undertook training on breaking bad news anddemonstrated empathy when having difficultconversations. Staff told us that they had receivedtraining on difficult conversations as part of theirquarterly nurse carer days.
Staff understood the emotional and social impact that achild or young person’s care, treatment or condition hadon their, and their family’s wellbeing. Staff identifiedchildren and young people and their relatives who wouldbenefit from an emotional wellbeing review in theservices local locality multi-professional meeting. Theservice undertook exceptional reporting to celebrategood practice and staff successes. We saw that staffencouraging open discussions about emotional supportwith relatives was viewed as a success to be celebratedby leaders in the service.
The service ensured staff were supported followingtraumatic events or a child’s passing. The service’schaplain held remembrance sessions for staff andfamilies. These focussed on remembering the child andmindfulness of the staff who had cared for them. Theservice held a number of mindfulness sessions for staffincluding guided relaxation sessions, colouring andgarden walks.
Understanding and involvement of patients andthose close to them
Staff supported and involved children, young peopleand their families to be partners in their care. Staffensured that they understood their condition andmade decisions about their care and treatment.They ensured a family centred approach.
Staff made sure children, young people and their familiesunderstood their care and treatment. Children and theirfamilies were seen as active partners in their care. Wespoke with the parent of a child staying at the hospicewho told us that all the staff had explained the care andtreatment clearly and that “without a doubt they havebeen so involved” with their child’s care planning.
Staff were fully committed to working in partnership withpeople. Families were invited and encouraged to attendthe daily planning meetings where the multi-professionalteam considered and planned for the patient and theirwhole family’s needs for the day.
Care plans included one-page profiles to ensure eachchild’s individual preferences were specified andunderstood by staff.
Staff empowered children and their families to have avoice and realise their potential. During each holisticneeds assessment the staff set goals with patients andtheir relatives to ensure that the care being delivered wasperson-centred, met the needs of the whole family andensured that all relatives who wished to be involvedcould be.
Staff talked with children, young people and their familiesin a way they could understand, using communicationaids where necessary. We observed staff explaining topatients and their family the care and treatment that wasbeing provided. During handovers staff always had aconversation with the patients and parents and took theirviews into account when discussing and planning careand treatment.
Staff supported children, young people and their familiesto make advanced decisions about their care. Advancecare plans allowed patients and their families to make aplan for future health and personal care if they shouldlose their decision-making capacity. The advanced careplans we viewed on inspection captured patients andfamily’s values and wishes and enabled them to continueto influence treatment decisions even when they couldno longer actively participle.
Children, young people and their families could givefeedback on the service and their treatment and staffsupported them to do this. Children, young people andtheir families gave positive feedback about the service.We saw the service undertook a family satisfaction andexperience survey in October 2019. The service invitedeach family who used the service in the previous sixmonths to complete an online survey. The survey askedsix questions based on their care they received from thehospice.
We reviewed the results of this survey and saw thirteenfamilies responded to the survey. Of these, 85% offamilies thought the service had listened to their needs
and 85% of families felt the service had responded totheir needs. 77% of respondents said they wouldrecommend the service to other families. We reviewedthe feedback from service users who would notrecommend the service and saw that the concerns raisedwere around access to short breaks and not the quality ofthe care provided.
Feedback comments from the survey included:
• “I knew my child would be so well looked after with allhis complex needs”
• “Care is always exceptional”• “fantastic support from the symptom management
team”
We saw that the service had put in place actions toaddress any areas where they did not feel they performedwell including following up any concerns with individualfamilies and to discuss findings with the Care OperationalLeadership team to compare across localities how shortbreaks were being offered to ensure fairness and equality.
Are hospice services for childrenresponsive to people’s needs?(for example, to feedback?)
Good –––
Our rating of responsive went down.We rated it as good.
Service delivery to meet the needs of local people
Children’s individual needs and preferences werecentral to the delivery of services and managersplanned and organised services so they met thechanging needs of the local population.
Children’s individual needs and preferences were centralto the delivery of tailored services and managers plannedand organised services so they met the changing needs ofthe local population. The service prioritised end of lifecare for children and young people. The service haddeveloped processes to enable flexibility to meet thechanging care needs and priorities of care for patients.The service prioritised end of life care and had staff onstandby to care for end of life patients in the event of ahospice closure.
The service had innovative approaches to providingperson-centred pathways of care that involved otherservice providers and charities. The service had adopteda needs-based approach and performed holistic needsassessment (HNA) for each patient to ensure they met thechild or young persons needs. The service discussed eachpatient’s HNA at the locality multi-professional meetings(LMPM) and decided how to ensure they worked togetherwith local charities and healthcare providers to enablechildren and their families to meet their goals and accessservices.
The service had systems to care for children and youngpeople in need of additional support, specialistintervention, and planning for transition to adult services.During our inspection we
observed a home visit with one of the service's long-termventilation (LTV) community outreach teams. This teamworked across the provider's three locations, with an LTVclinical nurse specialist (CNS) and LTV nurse primarilybased out of each hospice location. This team attendedchildren and young people in the community whorequired long term ventilation support, and providedthem and their families with help and support on theoperation and function of the child's ventilator. The teamhad trained teaching assistants in schools to care forchildren, so they could attend school among their peergroup.
During our observation of a home visit we saw the teamsystematically addressed all the child's needs andprovided expert advice and support where required. TheLTV community outreach team explained how they aimedto meet all of the needs of the local children and youngpeople they worked with.
The services were flexible and could be offered in anenvironment of the children and their families choosing.The service promoted informed choice when providinginformation on what services were available and wherechildren could receive them. All staff were trained todeliver care and support in the hospice, home, hospital orother community setting depending on the families’choice.
The service had a transition planning process andtransition lead to ensure that children transitioning toadult services were supported. The transition leadworked closely with adult healthcare organisations toallow children to visit organisations prior to transitioning.
Facilities and premises were innovative and met theneeds of a range of children who used the service. Therewas a designated bedroom with a cooling system and theservice had specialist cooling equipment, to allowfamilies to spend time with their children/loved onesafter they had died. Managers told us this service wasparticularly valued by bereaved families and that childrenwould often stay at the hospice until their funerals at thewishes of their families.
The service had a wide range of toys and equipmentdesigned for children of all ages and abilities in mind. Theservice had a vast outdoor play area with specialistequipment including a wheelchair swing. There was afully equipped sensory room with bubble tubes,fibreoptic lights, a heated water bed, jelly pads andprojectors.
The service had a range of onsite accommodation forparents and relatives to stay at the hospice including sofabeds in the children’s bedrooms and separateapartment-style rooms located away from the care floorwith washing and dining facilities.
People’s individual needs and preferences were central tothe delivery of services. Activities and events wereorganised to support differing groups including siblings,mums’ nights, dads’ activities, grandparent supportgroups, child support groups, teenagers andbereavement support groups.
The service held pizza nights for teenagers in the services“den” which was an environment designed for teenagerswith access to gaming technology, a cinema screen, afootball table and a large seating area. Staff told us thatthey would invite the children and young people’s peersto these to try and reduce the social isolation.
There were innovative approaches to providingperson-centred pathways of care which involvedconsulting with the local population. There was a scopingexercise underway at the time of inspection to betterunderstand the needs of the ethnicity and diversity of thepopulation around Peterborough. Leaders told us thiswould inform how to better deliver services locally.
The service was inclusive and took account ofchildren, young people and their families' individualneeds and preferences. There was a proactiveapproach to understanding the needs andpreferences of different groups of children and todelivering care in a way that met these needs. Staffmade reasonable adjustments to help children,young people and their families access services.
The service was accessible and promoted equality. Theservice championed holistic and individualised care forall patients, particularly those who were receiving end oflife care. The service had care co-ordination teams, whoreviewed the families regularly and brought any changesto be discussed to the locality multi-professional meeting(LMPM) and considered how best the family can besupported.
Each child and their family received a holistic needsassessment (HNA) from a member of the nursing teamswhich covered the care needs of the child as well associal and wellbeing needs of the wider family. Individualgoals were set in conjunction with the family and staffworked towards achieving these, reviewing themannually. We reviewed a number of HNA’s as part of ourinspection and saw that these were truly holistic, detailedand placed the child and family’s individual needs at thecentre of any care planning.
There was a proactive approach to understanding theneeds and preferences of different groups of children andto delivering care in a way that met these needs. Theorganisation had a lead chaplain who offered emotional,spiritual, religious or pastoral support to patients,relatives and staff of all, any or no faiths. The hospice hada private spiritual area which had religious texts forpatients and their families to use. Service leads activelysought input from religious leaders in the community andhad access to leaders from different faiths who wouldcome in and speak with patients and their families andperform religious rituals. Staff told us that the local imamhad put them in touch with women who prepareddeceased bodies in line with Islamic traditions and thatthey had attended the hospice and met with families toprovide guidance on Islamic traditions.
The service had commissioned a study to look into thepopulation needs of one of its localities to try and ensure
that services were accessible to all equality groups. Wesaw that needs of population groups were discussed inthe service’s clinical governance committee meetingminutes and how populations with higher rates ofdeprivation have a higher incidence of children andyoung people with life limiting conditions and how theycould ensure access to services in the deprived areas intheir locality.
The hospice was equipped to meet the needs of childrenand young people spending time with their families.Activities included specialist play, art therapy, musictherapy, use of the sensory room and hydrotherapy pool.Staff told us that one of children staying at the hospicehad enjoyed family swims with their sibling in the serviceshydrotherapy pool.
Staff used transition plans to support young peoplemoving on to adult services. The service started planningfor children and young people’s transition to adultservices five years in advance. We saw that the servicehad an electronic transition planner saved to the child oryoung persons electronic record. The planner could beamended by anyone in the organisation and outsideagencies with access to the electronic system. The servicewrote to healthcare providers when the young personwas 13 to give them the opportunity to contribute totransition planning. The service worked closely with alocal adult hospice and had held joint event days foryoung people transitioning into their services. Event dayswere for patients and their families and had includedbarbeques, complimentary therapies and virtual realityexperiences.
The service ensured they marked a child or young persontransitioning to adult services with bespoke goodbyeevents with young people and their families. Examples ofsome of the events include tea parties, cinema trips,pottery sessions and bowling.
Staff had access to communication aids to help children,young people and their families become partners in theircare and treatment. Managers made sure staff, children,young people and their families could get help frominterpreters or signers when needed. The service hadaccess to a face to face and telephone translationservices for families for whom English was not their firstlanguage. The service could also access a sign languageinterpreter, when needed.
Children, young people and their families were given achoice of food and drink to meet their cultural andreligious preferences. The service had an onsite cateringteam who took pleasure in ensuring that children andtheir families had access to nutritious meals that wereinclusive and met the diverse needs of service users.
Access and flow
People could access the service when they needed itand received the right care promptly. However, theservice had a number of cancellations for plannedshort breaks. Between October and December 2019there were four instances of short-breakcancellations by the service. The service were in theprocess of a service-redesign to reduce short-breakcancellations.
Managers made sure children, young people and theirfamilies could access services when needed. Referralscould be made by professionals or directly by the child’srelatives. We saw that referral forms were available on theservices website. When referrals were received they wereconsidered by the service’s central panel to decide if thereferral met the services eligibility criteria. Any referralsrequesting ‘same day admission’ or ‘urgent’ werereviewed by the hospice leadership team and would notwait for the central panel meeting. We attended theweekly central panel meeting during the inspection, andsaw staff discussed the child or young person’s needs, theneeds of the family and also discussed capacity of theunit and safe staffing. Once it had been decided to acceptthe referral, the information was taken to the localitymulti-professional meeting (LMPM) to organise andprepare for completion of the holistic needs assessment(HNA).
Nursing teams had a caseload of children who they sawfrequently and could discuss children and their careneeds at LMPM meetings to decide with the operationalmanagement team what care planning could be offered.This could include access to hospice facilities and therapysessions, such as hydrotherapy, art or music therapy, orthe facilitation of planned short break stays.
The service prioritised end of life care patients andensured they met the demand for this care by divertingstaff from other sites to the hospice or community if a
child was receiving end of life care. We saw feedback froma patient’s families about how the service had opened toensure that their relative received end of life care in theirchosen place.
Healthcare professionals and children’s families couldaccess clinical advice and support out of hours from theservice’s managed clinical network if the patient wasknown to EACH. The managed clinical network washosted by EACH and provided access to specialistpalliative care advice. The team consisted of children’spalliative care trained consultant paediatricians andnurse consultants.
Managers worked to keep the number of cancelledplanned short break to a minimum. The service had nowaiting lists for targeted wellbeing interventions but didhave instances of hospice closures and cancelled shortstays.
The amount of planned short break care available wasbased on staffing levels and other demands on theservice such as end of life care provision. Managersarranged additional staffing from one of the other EACHhospice locations where necessary. To reduce any impactto staff, managers offered staff overnightaccommodation, use of pool cars and reduced workingdays to the affected staff.
We reviewed data on the number of unplanned closuresof the hospice from October to December 2019. Therewere three planned closures overnight and two instancesof unplanned closures due to staff sickness. BetweenOctober and December 2019 there were four instances ofshort break cancellations by the service. This wascomparable with the other hospice sites the provider had.
The service had received poor feedback aroundcancellations and availability of short breaks offered aspart of the family satisfaction survey. 31% of participants(out of 13 families) rated the service as poor, the surveylooked at reasoning for this and saw that there wasdissatisfaction among families when the service hadlimited the episodes of care that children could receive orhad reduced the number of overnight stays a child couldreceive. The service had analysed the responses and wereimplementing new ways of working to increase capacity
to deliver end of life and urgent care simultaneously withshort breaks to reduce the number of short breakcancellations and improve patient and familysatisfaction.
Managers were aware of the cancellations, monitoredthem and had a programme of improvement in place toaddress the concerns. The service was in the process of aservice redesign to try and reduce the number ofcancelled short breaks. The service recently implementedholistic needs assessments looked at providing familieswith the specific care and input they needed includingallocating short breaks. The service previously providedshort breaks on an ad hoc basis and were trying to ensurethe service went to those families who were in need andhad this highlighted in their assessments.
Managers in the service were acutely aware of the impactcancellations had on families and were committed toreducing them. In order to prevent cancellations in theevent of an end of life care patient, service and clinicalleads had trained and upskilled care assistants to be ableto take responsibility and care for children with stablecare needs, allowing the registered nurses to focus givingend of life care and urgent care.
Learning from complaints and concerns
It was easy for people to give feedback and raiseconcerns about care received. The service treatedconcerns and complaints seriously, investigatedthem and shared lessons learned with all staff. Theservice included children, young people and theirfamilies in the investigation of their complaint.
Children, young people and their families knew how tocomplain or raise concerns. Families we spoke with toldus they knew how to make a complaint or raise concerns,however had felt no reason to do so.
The service clearly displayed information about how tocomplain. Leaflets were available throughout the serviceand the provider had a dedicated section on theirwebsite which contained contact details for those wishingto raise compliments or concerns.
The service had received one formal complaint fromOctober 2018 to September 2019 which was managedand resolved under the services formal complaintprocedure.
Staff understood the policy on complaints and knew howto handle them. Staff supported families to makecomplaints and had access to policy and procedures toguide them in managing complaints. Staff told us theyalways tried to resolve any issues or complaints withfamilies at the time they were raised. Concerns andcomplaints were logged on the services electronicincident reporting system to ensure managers wereaware and could investigate.
Managers investigated complaints and identified themes.Complaints and concerns were reported as part of theservice’s balance score cards where the complaintoutcomes and any learning were detailed. Managersshared feedback from complaints with staff and learningwas used to improve the service at the services quarterlyteam days. Complaints were logged and investigated inline with incidents in the service and investigationoutcomes were discussed at the weekly localitymulti-professional meeting.
The service had an up to date complaints policy whichincluded staff roles and responsibilities. The complaintspolicy stated that complaints would be acknowledgedwithin three working days. There was no set timeframefor complaints to be investigated and closed by.Managers told us that they contacted the complainantadvising them how the complaint would be investigatedand how long it was expected to take. At the end of theprocess a letter was sent to the complainant explainingthe conclusions of the investigation and what thecomplainant could do if they were unhappy with theoutcome.
Complaints were investigated locally by the servicemanager and the matron. The hospice chief executivehad overall responsibility for the management ofcomplaints.
The service had received 38 written compliments fromOctober 2018 to September 2019. Compliments wereshared with staff through the services balance scorecards. However, we saw many more expressions ofgratitude during the inspection. These includedcompliments about how the whole family feeling caredfor not just the patient, how care was focussed andindividual, how caring the staff were and how patientsand their families were treated with dignity andcompassion.
Our rating of well-led improved.We rated it asoutstanding.
Leadership
Leaders at all levels had the skills and abilities to runthe service. They understood and managed thepriorities and issues the service faced. They werehighly visible and approachable in the service forpatients and staff. They supported staff to developtheir skills and take on more senior roles.
We saw that there was compassionate, effective andinclusive leadership at all levels. The executive leadershipteam consisted of the acting chief executive officer (CEO),acting director of care, director of finance, director ofincome generation, director of workforce and corporategovernance and head of marketing and communications.The acting CEO and acting director of care had been inpost for six months, but both had previously beenworking in the organisation in deputy roles. At a locallevel, the service had an established local operationalleadership team made up of the service manager, clinicallead (matron) and a well-being lead.
Despite there being a number of senior staff in acting uproles, there was an embedded system of leadershipdevelopment and succession planning. The service had aplan in place to appoint to these roles permanently andwere working with the board of trustees to ensure thatthe appointments were appropriate. The service hadadvertised the role and had a recent round of interviewsfor the chief executive role. During this interim period theexecutive team had hired a human resources consultantto come in and listen to staff to ensure they felt supportedand to highlight any areas of improvement for the interimteam. The acting CEO was supporting those in otherinterim positions and had a wealth of experience in thehospice sector and leadership roles.
The executive leadership team was accountable to theEACH board of trustees, who had a range of relevant
expertise to contribute to the service. The trustees told usthat they had a good working relationship with theexecutive team and that they felt their support andexpertise was valued.
Trustees ensured they met their governanceresponsibilities by sitting on the service’s various boardssuch as the clinical governance committee, finance andincome generation committee and safeguarding board.The trustees held quarterly meetings with a set agendathat included training, matters for decision and mattersfor information. The trustees we spoke with had a goodunderstanding of quality and care and the challenges theorganisation faced. Trustees performed care quality visitsat the organisations various sites to increase theirunderstanding of quality and ensure they had oversightof the care provided.
All staff we spoke with told us that the senior leadershipteam were visible, approachable and supportive. Stafftold us that you could raise concerns or feedback with theservice’s leadership team and they felt confident thataction would be taken.
New starters within the organisation had a meeting withthe acting CEO as part of their induction. One member ofstaff told us that the acting CEO had encouraged them asa new starter to raise concerns and voice anyimprovements they felt could be made. One member ofstaff told us that the senior leadership team made themfeel like they were all working towards a common goaland allowed them to make a real difference to childrenand their families.
Staff told us that communication from the executiveleadership team was regular and clear. Staff told us thatthe executive team did annual management executivebriefs where the team came and spoke to staff aboutfinances, the strategy and highlighted good practice.These sessions provided the opportunity for staff toprovided feedback to the executive team.
All leaders within the service demonstrated the highlevels of experience, capacity and capability needed todeliver excellent and sustainable care. Leaders within theservice had vast experience and expertise developedfrom working in the palliative care sector and widerhealth economy.
Leaders within the service had a deep understanding ofissues, challenges and priorities in their service, the wider
organisation and the children’s hospice sector. Theseincluded funding, staff recruitment and future servicedemand. A culture of continuous improvement andservice development was embedded throughout theservice. The leadership team had worked to mitigatesome of the recruitment challenges by introducing aprogramme of education to upskill care workers to allowthem to take on some nursing responsibilities.
There was an embedded system of leadershipdevelopment. The service had implemented leadershipschemes including a progression framework for nursingstaff.
Vision and strategy
The service had a clear vision for what it wanted toachieve and a detailed strategy to turn it into action,developed with all relevant stakeholders. The visionand strategy were focused on sustainability ofservices and aligned to local and national planswithin the wider health economy. Leaders and staffunderstood and knew how to apply them andmonitor progress.
The service had a clear vision which was to ‘aspire daily tolead the way in providing world class care for childrenwith life-threatening conditions’ and that ‘every childdeserves support, alongside their families, whenever andwherever they need it’. Alongside this the service had amission statement ‘to improve the quality of life andwellbeing of every child and family under their care, byproviding individual and comprehensive services at alltimes’.
The service had four core values:
• Empathy and understanding – understanding the viewsand feelings of others is central to our workrelationships and how we interact daily.
• Commitment to quality – we consistently employ ourbest efforts and strive for the highest standards ineverything that we do, always looking for ways toimprove.
• Open and respectful – we operate in an honest andparticipative way. Welcoming constructive feedback anddifferent views, we understand the power of words andbehaviour and hold ourselves accountable formaintaining a positive and considerate workenvironment.
• Make it happen – we are empowered to and takeresponsibility for getting things done.
Staff within the service were aware of the vision andstrategy and felt committed to achieving them. Families,staff, volunteers and external stakeholders were engagedin the development work. Staff were expected to provideexamples of how they demonstrated the values as part oftheir annual appraisal process.
There was a rolling five-year provider strategy reviewedby the Board annually. There was a systemic andintegrated approach to monitoring, reviewing andproviding evidence of progress against the strategy. Thiswas translated into annual goals and priorities whichwere monitored by the care strategic leadership team,clinical governance committee of the board and trusteeboard. We saw from minutes of the service’s trusteeboard meetings that issues in the wider health economyand hospice sector influenced the planning of theservice’s strategy.
We reviewed the strategy and saw it was aligned withlocal plans and the wider health economy and includedactions to continue and create effective beneficialpartnerships with local, regional, national andinternational organisations. The strategy detailed howgoals were to be monitored as part of the service’sgovernance structure.
Culture
Staff felt respected, supported and valued. Theywere focused on the needs of children, young peopleand their families receiving care. The servicepromoted equality and diversity in daily work andprovided opportunities for career development. Theservice had an open culture where children, youngpeople and their families and staff could raiseconcerns without fear. Leaders had a sharedpurpose, strived to deliver and motivated staff tosucceed.
The service had a person-centred culture andencouraged staff to promote patient and relative welfareat all times.
Leaders had a shared purpose and strived to deliver andmotivated staff to succeed. We saw that staff championedpatients and their relatives in locality multi-professionalmeetings. For example, a relative had requested having a
room to put their possessions in when attending day carewith their child, when discussing the request onemember of staff enthusiastically said “if it makes all thedifference to mum and it’s achievable, let’s do it”. We sawthat leaders assigned actions to staff to make thispossible.
There were high levels of satisfaction across all staffgroups and staff repeatedly told us that they were proudto work for the service. All staff we spoke with told us theyenjoyed working at EACH. Staff told us that managerspromoted a culture of positivity and praise among staff.Managers sent weekly “good news” emails which featuredpraise for staff for any achievements that week.
Staff at all levels were actively encouraged to speak upand raise concerns and there were policies andprocedures in place to support this process. Staff wereencouraged to report incidents and raise concerns orissues, so they could learn from them and improve theservice they offered. Staff provided examples of wheresenior management had sought their input andwelcomed challenge. One member of staff told us thatwhen they met with the acting CEO they encouragedthem to voice concerns and give feedback on anyimprovements that could be made and valued themember of staff as a pair of “fresh eyes” into theorganisation.
Patients and their families were encouraged to raiseconcerns and there was information available on the carefloor explaining how to do so. Leaders within the servicetreated all concerns seriously and told us they wouldspeak to families to try and resolve concerns as soon aspossible.
We saw that across the organisation there was strongcollaboration and effective team working with a commonfocus on improving the quality of care and people’sexperience. The services governance structuressupported collaboration across the teams and we sawthat cross-team working was praised by senior staff. Staffprioritised the holistic needs of each patient and familyand used evidence-based models to ensure they weredelivering the best possible care. Therapy staff we spokewith talked about how their sessions were reviewed bypatients and their family and how they used this feedbackto improve and individualise the care given. For example,therapy staff told us about a sibling of a patient whohadn’t engaged very well with other services but
attended a music therapy session and fed back that theyparticularly liked the drums. Staff created a care plan thatallowed the child to use the drums as a source ofcommunication for their emotion.
Staff unanimously told us that they worked well as a teamwith different healthcare professionals and providers.
Governance
Leaders operated effective governance processes,throughout the service and with partnerorganisations. Staff at all levels were clear abouttheir roles and accountabilities and had regularopportunities to meet, discuss and learn from theperformance of the service.
There were effective structures, processes and systems ofaccountability to support the delivery of the strategy andgood quality services. The service’s local leadership teamconsisted of a service manager, matron and localitywell-being lead and they had the responsibility foroversight of governance and quality monitoring.
The services corporate governance structure featuredlocal level care quality safety groups, strategic leadershipgroups and corporate quality and governance groupswhich fed into the management executive groupmeetings (MEX). The MEX meetings fed into boardcommittees such as the clinical governance boardcommittee, audit and compliance board committee andHR board committee.
Local governance meetings included the services weeklycentral panel which reviewed admissions, incidents andcomplaints. These fed into the local multidisciplinaryteam meetings which included a set agenda to look atincidents, exceptional reporting and learning fromdeaths.
The local leadership team fed any concerns they had tothe management executive team which consisted of theacting chief executive officer (CEO), deputy CEO, actingdirector of care, director of finance, director of incomegeneration and director of workforce.
A systemic approach was taken to working with otherorganisations to improve care outcomes. The service wasproactive within the local health economy and workedclosely with adult hospices, children’s hospices, localacute and community trusts, local faith groups and
hospice charities. The service provided best practiceadvice to national children’s hospice charities. Theservice’s acting CEO had been appointed as an advisor tothe board for a national children’s palliative care charitywho advised on national initiatives and changes to policyand legislation. The services nurse consultant was thevice chair for a national nursing organisation’s childrenand young people palliative care community group.
Managing risks, issues and performance
The service had good systems to identify risks, planto eliminate or reduce them, and cope with both theexpected and unexpected.
There were robust arrangements for identifying,recording and managing risks, issues and mitigatingactions. The management executive provided oversightand scrutiny of operational risks. There was ademonstrated commitment to best practice performancemanagement and risk management systems andprocesses.
The provider had an operational risk register whichcontained all current risks at all three hospice sites. Wereviewed the risk register, which was updated in October2019, and contained 12 active risks. Each risk entry wasdetailed and contained a risk rating, a risk owner, reviewdate and target risk rating. The risks echoed what seniorstaff told us were the risks including the gap with adultsafeguarding training, nurse recruitment and failure todeliver care.
Problems were identified and addressed quickly andopenly. We saw that mitigating actions were put in placefor each risk and progress against the risk was assessed.The risk register was reviewed by the clinical quality andsafety group. We reviewed three sets of minutes from thegroup and saw that risks and gaps in assurance werediscussed and escalated appropriately. The service’soperational risk register fed into the board assuranceframework if risks were rated as red.
Staff told us that risks were reported through the service’sincident reporting system and fed into the clinical qualityand safety group by the operational leadership team.
The board reviewed the corporate risks that featured inthe board assurance framework (BAF) annually. Anychanges to the risks during the year were reported to the
board at their quarterly meetings. The committees ofEACH’s board of trustees regularly reviewed the strategicrisks relating to their responsibilities and operationalrisks.
The service monitored performance against keyperformance indicators (KPI) through a quarterlybalanced scorecard report, which included referrals,service user experience, complaints and concerns,training, staffing, staff survey results, audit results,learning from deaths and incidents, research activity,update on service redesign and financial performance.We saw that the service measured performance by usinga number of different metrics including: whether requeststo deliver end of life care were met, holistic needsassessment completion, vacancy rates and staff surveyresults. The KPI’s were red-amber-green rated todetermine how well the service was achieving the metric.We reviewed two balance score cards and saw that wheremetrics were rated as amber or red commentary wasprovided including how the service were working toimprove the result.
The service reviewed mortality as part of their localdisciplinary meeting and had a standard agenda item forlearning from deaths to ensure learning was shared. Weattended one of the meetings and observed this takingplace.
Managing information
The service collected reliable, detailed data andanalysed it to drive forward improvements. Staffcould find the data they needed, in easily accessibleformats, to understand performance, makedecisions and improvements. The informationsystems were integrated and secure. Data ornotifications were consistently submitted toexternal organisations as required.
There were systems in place to ensure that data andnotifications were submitted to external bodies asrequired, such as local commissioners and the CareQuality Commission (CQC). The service had engagedregularly and openly with CQC inspectors throughout theyear prior to inspection.
The services information systems were secure. Theservice used a secure electronic records system to recordcare plans and medical records for children and youngpeople. Access to the system was restricted and staff weregiven individual log ins.
The service ensured that staff were aware of dataprotection requirements. The service providedmandatory training to all staff and volunteers oninformation governance processes.
The service collected data by using an internal auditprogramme as well as key performance indicatorinformation. This information was reported on to theboard through various committees and droveimprovements throughout the service.
Engagement
Leaders and staff actively and openly engaged withchildren, young people, families, staff, equalitygroups, the public and local organisations to planand manage services. They proactively collaboratedwith partner organisations to help improve servicesfor children and young people.
There was consistently high levels of constructiveengagement with staff and people who used services,including equality groups. Staff within the service gaveexamples of how they actively sought the input of localfaith and community groups to ensure services weredelivered in line with individual patient needs. Examplesof this included engaging a group called The MuslimSisters to assist with Muslim traditions when patientswere receiving care at the hospice. The service had plansin place to start a hub within the local community toencourage hard to reach groups to access services.
The service had a quarterly family newsletter to keepfamilies informed of events within the hospice.
Rigorous and constructive challenge from service users,their family and staff was welcomed and was seen as avital way of holding services to account. Staff consistentlytold us that their feedback was sought and actioned bythe senior leadership team. Staff were provided with theopportunity to give feedback at the services quarterlyteam days. We saw that feedback provided by serviceusers informed operational changes and serviceplanning.
Services were developed with the full participation ofservice users, staff and external partners. The service heldfamily lunch events to provide families with theopportunity to meet with senior care leaders to providefeedback and to give advice on the service’s redesign.Service user feedback had prompted the service redesignand families and staff feedback was sought in theplanning of this.
Innovative approaches were used to gather feedbackfrom patients and their families. The service had an activeservice user forum and palliative care group. The serviceactively encouraged children, young people and familiesto give feedback through evaluation forms, feedbacksuggestions box, annual satisfaction and experiencesurvey, comments through the family section on theEACH website, comments slip in the Family Cornernewsletter and social media.
The service took a leadership role in its local healthsystem to identify and proactively address challengesand to meet the needs of the local population. Theservice ensured they were partnering with otherorganisations to ensure they were effectively meetingchildren’s needs and sharing best practice. The servicehosted the regional palliative care forum, this wasresponsible for developing and implementing thepriorities of the managed clinical network. The regionalforum was chaired by the acting director of care andattended by the medical director and nurse consultant.Leaders within the service attended the county-basedpalliative care networks and regional action groups foryoung people.
Learning, continuous improvement and innovation
All staff were committed to continually learning andimproving services. Staff actively shared learningthroughout teams. They had a good understandingof quality improvement methods and the skills touse them. Leaders encouraged innovation andparticipation in research.
Innovation and learning was encouraged throughlistening to staff and families and encouraging ideasthrough the ideas email inbox to the operationalleadership team. Improvement was seen by leaders asthe way to deal with performance and for theorganisation to learn and excel.
Staff were empowered to lead and deliver change. Theservice had established and hosted a managed clinicalnetwork which provided out of hours access to specialistmedical support and advice, provided education anddeveloped and promoted good practice and guidance.The service consisted of one tertiary centre and ninedistrict general hospitals.
The services symptom management team hadestablished a symptom management clinic wherepatients could attend the hospice in an outpatient settingto discuss their symptoms and be reviewed with theservices specialist nurses.
Innovation was celebrated and there was a clear,proactive approach to seeking out and embedding newand more sustainable models of care. The servicecommissioned a university study to evaluate thewell-being interventions and therapies offered by theservice. The study confirmed that the service had a variedworkforce, who provided a range of supportive therapiesthat were appropriate for supporting the needs ofchildren with life-limiting or life-threatening conditions,and their family.
The service prioritised wellbeing and ensured thatwellbeing management was placed on the same level asclinical management by having a wellbeing lead as partof the operational leadership team.
The service ensured that care episodes were truly holisticand catered to individual needs. The service’s holisticneeds assessments and six step wellbeing assessmentsensured that appropriate therapies were provided tochildren and their families. Goal measuring in therapiesand holistic needs assessments ensured that the servicecould monitor the effectiveness of their assessments andtherapy input.
There was a strong record of sharing work locally andnationally. The service undertook a leadership role invarious children’s palliative care forums nationally andadvised children’s hospice charities on best practice to beshared across the sector. Staff contributed to academicresearch into children's palliative care. For example, wesaw a number of staff had published research articles onpeer reviewed scientific journals including a study onbuccal opioids for breakthrough pain in children withlife-limiting conditions receiving end of life care.
• The service had developed an innovative long-termventilator community outreach service, which staffand managers continually reviewed to ensure it metthe needs of the children, young people and theirfamilies who used the service. The team had trainedteaching assistants in schools to care for children, sothey could attend school among their peer group.
• The service had developed a nurse-led symptommanagement out patient clinic to allow children andtheir families to be assessed and have their care needsaddressed without having to be admitted to theinpatient.
• The service had developed a truly holistic assessmentmodel which placed children and their families at thecentre of care planning. Children and their familieswere asked what they wanted to achieve while beingunder EACH’s care and staff were passionate aboutensuring these goals were achieved and that childrenand their families were engaged with the care planningprocess.
• The service had formed effective working relationshipswith other care providers, local faith leaders,community organisations and charities providingnational guidance. The service had taken a leadershiprole in the local healthcare environment to meet theneeds of the local population through thedevelopment of the managed clinical network andhosting the regional palliative care network.
• Staff repeatedly went the extra mile in their care andwere committed to find ways to make a difference tochildren and their families. Staff got to know childrenand their families as individuals and built up a strongrapport with them to enable innovative care.
• Service leaders welcomed challenge and haddeveloped an open and transparent culture at alllevels. Staff unanimously spoke about the supportiveand effective leadership in place both locally andexecutively. Staff at all levels were committed toprovide the best care and treatment for children andyoung people, and their families.
Areas for improvement
Action the provider SHOULD take to improveWe found the following areas of improvement:
• The service should consider undertaking infectioncontrol audits of the service more regularly.
• The service should ensure that staff meet thesafeguarding adults mandatory training requirements.
