A resource for Occupational

Therapists working with parents who

have a neurological condition

Patients who are parents

A resource for OTs working with patients with a parenting role We have developed this resource to signpost therapists to the information available for people

who have been diagnosed with a neurological condition/ injury which may impact on their role as

a parent. We have also provided some information relating to people caring for a parent with a

neurological condition/injury. We hope it is useful in helping you access the information you need

and resources available.

Please note some of the links are not accessible to staff outside of the National Hospital for

Neurology and Neurosurgery. We have tried to include all external links where possible.

Contents

1. Condition specific information related to parenting

2. Risk assessment

3. Current legislation

4. Inter-agency roles and responsibilities

5. Developmental stages

6. Equipment

1). Condition specific information related to parenting

I. Multiple Sclerosis

II. Motor Neurone Disease

III. Parkinson’s’ Disease

IV. Stroke

V. Brain Cancers

VI. Brain injuries

VII. General resources

I. Multiple Sclerosis (MS)

http://www.nationalmssociety.org/Living-Well-With-MS/Family-and-Relationships/Parenting

This is an activity book for children, in storybook format, which explores living as a child of a

parent who has MS.

http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Newsletters/Kee

p-S-myelin-Activity-Book-Kids.pdf

This article provides a comprehensive factsheet on pregnancy with MS.

http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Documents/PRE

GNANCY_Final.pdf

This site provides an interactive means of educating older children on MS.

http://digestingscience.co.uk/games/human-body/

https://www.mssociety.org.uk/ms-support/emotional-support/living-with-ms/telling-your-family

The MS Society is an UK based charity whose website contains lots of advice on living with MS and the support available. The following link provides access to a page that provides advice and resources for telling your children that you have MS. There are also links to child friendly resources for under 10’s intended for parents and children to read together.

The National MS Society is an American organisation whose website provides resources and advice on living with MS. The following links provide advice for parents and parents to be.

They have also created a YouTube channel featuring videos on a range of different topics -

everything from symptoms to how MS makes you feel. MSTV is here to help young people get to

grips with MS.

https://www.youtube.com/channel/UCDpRChXw7T35STiZmafS7uQ

MS Trust is a UK charity. They have developed this book by:

looking at the concerns parents may have,

things children may want to know and

what other parents' experiences have been.

You can order copies via this link:

https://support.mstrust.org.uk/shop?prodid=316#searchGifts

II. Motor Neurone Disease (MND)

http://www.mndassociation.org/wp-content/uploads/2015/07/04a-communicating-about-mnd-with-

children-and-young-people.pdf

http://alsworldwide.org/care-and-support/article/talking-with-children

ALS worldwide is a USA based non-profit organisation

providing support for people with ALS. They provide guidance

for parents with ALS.

The Motor Neurone Disease Association is a UK based charity providing support and advice to those affected by Motor Neurone Disease (MND). The following link takes you to a document providing advice and guidance on communicating with children and young people about MND.

III. Parkinson’s Disease

The following link is for a guide for teenagers who have a parent or family member with

Parkinson’s disease:

PDF format: Guide to PD for teenagers.pdf

Webpage:

https://www.parkinsons.org.uk/information-and-support/guide-parkinsons-teenagers

The following link is also from Parkinson’s UK and provides advice and guidance for adults on

discussing Parkinson’s disease with children and teenagers.

https://www.parkinsons.org.uk/content/talking-children-and-teenagers-about-parkinsons

Parkinson’s UK is a charity providing advice to people affected

by Parkinson’s disease. They provide a wide variety of

resources to help communicate about Parkinson’s disease with

children and young people.

IV. Stroke

https://www.stroke.org.uk/resources/all-about-stroke-information-children

https://differentstrokes.co.uk/stroke-information/information-pack/

https://www.headway.org.uk/about-brain-injury/individuals/relationships-after-brain-

injury/parenting-and-supporting-children/

The Stroke Association provides advice for people affected by

stroke. The following document provides information for children

whose family have been affected by stroke. The document contains

easy to understand stroke education and advice on how to deal with

difficult conversations.

Different Strokes are a UK based charity focusing on younger

stroke survivors, including people of working age. They can provide

individual counselling. They have many resources including advice

on family life, caring for a parent who has had a stroke, and

accessing benefits. They also provide a resource pack on how to

tell children if a parent has had a stroke. Resources are age friendly

and are available in a variety of formats.

Headway are a UK based charity providing information and support for

people that have survived brain injuries (including strokes) and their families,

carers and partners. Headway provides specific advice on the challenges of

providing parenting following a brain injury:

V. Brain Cancers

http://www.brainstrust.org.uk/Uploaded/FILE-20150505-13127XUM1G5R41MB.pdf

The Brains Trust is a UK based charity offering advice and resources

for people affected by brain cancer. The Little Brains Trust is a charity

offering advice and support for children diagnosed with brain cancer.

The following document provides advice and guidance to adults on

discussing cancer with children:

The "Nurse Ted" series of award winning picture books are designed to support children's understanding of what is happening to a family member who is affected by a brain tumour, cancer, or other serious illness.

http://www.nurseted.com/

‘Toby Teapots Daddy Has a Poorly Lid’ is a short story

for children that use accessible characters to help explain

to a child a parent being diagnosed with a Brain Tumour.

It follows Toby the teapot's Daddy through the journey of

the first signs and symptoms, diagnosis and treatment. A

donation from the sale of each book goes towards

supporting those affected by brain tumours.

https://www.amazon.co.uk/Toby-Teapots-Daddy-has-poorly-lid/dp/B00KAUWXTG

VI. Brain Injuries

The following link provides information and advice on possible family reaction to a brain injury,

and living with a brain injury as a family.

https://www.headway.org.uk/about-brain-injury/individuals/caring/family-reaction-to-a-brain-injury/

They also have specific advice on the challenges of providing parenting following a brain injury:

https://www.headway.org.uk/about-brain-injury/individuals/relationships-after-brain-

injury/parenting-and-supporting-children/

Headway is the UK-wide charity that works to improve life after brain

injury. Through its network of more than 125 groups and branches

across the UK, it provides support, services and information to brain

injury survivors, their families and carers, as well as to professionals

in the health and legal fields.

VII. Non condition specific parenting resources

General NHS advice signposts to local council, social services assessment to explore support

with feeding, bathing, taking child out of house, getting ready for school/nursery, baby and toddler

activity groups:

http://www.nhs.uk/Livewell/Disability/Pages/help-for-disabled-parents.aspx

http://www.winstonswish.org

This website www.disabledparent.org.uk provides practical information and support for

disabled parents. It has publications on specific guidelines e.g. carrying a baby in a wheelchair,

costing £6.00. They also provide training for professionals on understanding and meeting the

needs of disabled parents.

http://www.home-start.org/about-us

Home start is one of the leading family support charities in the UK.

Their volunteers may be able to provide the following support:

attending hospital appointments

practical support, and

financial support for medical equipment or to adapt the home.

The case study video is about a father with a TBI.

Winstons Wish is a childhood bereavement charity. It has a helpline,

email service support and they give advice about talking to children

about death.

Specialist Disability Service at the Oxford Centre for Enablement:

Baby care advice for people with a physical disability

The aim of this service is to provide advice to people with complex physical disabilities who take

an active role in caring for a new born baby. An Occupational Therapist will discuss the client’s

concerns and answer their questions. The client will also have the opportunity to practise caring

for their baby with the help of a life-size weighted baby doll, so that they gain experience and

confidence.

Health and social care professionals can make a referral. You can find referral forms here:

www.ouh.nhs.uk/oce/services/specialist-disability-service.aspx

The service covers much of southern England, and sometimes further afield but is dependent

upon having a contractual arrangement and funding available from the client’s local Clinical

Commissioning Group.

You can find the service information leaflet with further contact details here:

https://www.ouh.nhs.uk/patient-guide/leaflets/files/33109baby.pdf

2). Risk Assessment

This risk assessment can be used as an MDT or individually to help determine a patient’s ability

to carry out their role as a parent and to assist in identifying any further treatment needs or action

plans. You can find a PDF copy here.

Parental Ability Risk assessment

Comments

1. Details of the patient’s child/ children or any children they care for (Names and ages)

2. Can the parent meet the following childcare needs:

Y/N Comments

A) Hygiene and personal care needs eg. Dressing, bathing, brushing teeth and

hair. B) Hydration and nutrition

eg. Preparing a meal, preparing formula or

bottles, holding child for feeding, cutting

up food, recognising signs of hunger or

thirst. C) Domestic care needs

eg. Shopping, laundry, cleaning D) Ensuring safety

eg. Recognising and responding to

hazardous situations for the child/ children

both in the home and outside, Recognise

and Identify the need for medical

attention/treatment. E) Emotional needs

eg. Can they recognize their child’s

emotional needs and respond

appropriately to ensure the child feels

loved and valued? Getting up with their

child either during the night or early in the

morning? F) Stimulation

eg. Through play and educational

opportunities? G) Guidance and Boundaries

eg. Maintaining discipline, be a role model

through demonstrating appropriate

behaviour

3. Are there any other agencies involved with the children? If so please give details, i.e. health visitor/ social worker/ school.

4. Do the child/ children live with the patient?

If not with whom and where do the child/ children live?

5. Does anybody else live in the property?

Will the parent be expected to look after the child/ children at any time of their own?

If so give details

6. Do/ does the child/ children get to school and do they attend regularly?

If no please provide details.

Completed by:

Date:

3) Current legislation

The Care Act 2014

The Children and Families Act 2014

The Care Act 2014:

http://www.legislation.gov.uk/ukpga/2014/23/contents/enacted

Summary: https://www.gov.uk/government/publications/care-act-2014-part-1-factsheets/care-act-

factsheets

What role do local authorities play in care and support?

Local authorities need to make sure that people who live in their areas receive services that

prevent their care needs from becoming more serious, or delay the impact of their needs.

Local authorities need to provide comprehensive information and advice about care and

support services in their local area.

What is the assessment process?

An assessment is how a local authority decides whether a person needs care and support to help

them live their day-to-day life.

The assessment must consider a number of factors, such as:

the person’s needs and how they impact on their wellbeing

the outcomes that matter to the person

the person’s other circumstances - for example, whether they live alone or whether

someone supports them

The aim is to get a full picture of the person and what needs and goals they may have.

What are the requirements for assessment?

As part of the process, the authority must consider other things besides services that can

contribute to the desired outcomes. In addition to this whether any universal preventative

services or other services available locally could help them stay well for longer.

The regulations which support the Act, ensure that the assessment is appropriate and

proportionate, so that people have as much contact with the authority as they need. In addition,

they require the authority to consider the wider needs of the family of the person (for

instance, if there is a young carer).

How does the authority determine who has eligible needs?

Determining eligible needs is important to work out, as the local authority must meet the adult’s

eligible needs for care and support. The person will have eligible needs if they meet all of the

following:

they have care and support needs as a result of a physical or a mental condition

because of those needs, they cannot achieve two or more of the outcomes specified

as a result, there is a significant impact on their wellbeing

The outcomes are specified in the regulations, and include people’s day-to-day outcomes

such as dressing maintaining personal relationships, and working or going to school

Who is a carer?

A carer is someone who helps another person, usually a relative or friend, in his or her day-to-

day life. The Care Act relates mostly to adult carers – people over 18 who are caring for another

adult. This is because young carers (aged under 18) and adults who care for disabled

children can be assessed and supported under children’s law.

The Children and Families Act 2014:

http://www.legislation.gov.uk/ukpga/2014/6/contents/enacted

Summary:

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/359681/Young_Person_s_Guide_to_the_Children_and_Families_Act.pdf

The Children and Families Act creates a new ‘birth-to-25 years’ Education, Health and Care Plan

(EHC) for children and young people with special educational needs , and offers families

personal budgets so that they have more control over the type of support they get. In some

cases, where a person is over 18, the ‘Care’ part of the EHC plan will be provided for by adult

care and support, under the Care Act 2014.

For children and young people with special educational needs, the act aims to:

• Get education, health care and social care services working together

• Tell children, young people and their parents what they need to know about their disability or

special educational needs

• Make sure children, young people and families know what help they can get and give them

more say about this help

• Set up one overall assessment to look at what special help a child or young person needs with

their education, and their health and social care needs, all at the same time

• Give a child or young person just one plan for meeting their education, health and social care

needs, which can run from birth to age 25 if councils agree that a young person needs more time

to get ready for adulthood

Young carers

The Care Act 2014 does not deal with assessment of people under the age of 18 who care for

others. The Children and Families Act 2014 gives young carers a right to a carer's assessment

and to have their needs met. The Care Act and the Children and Families Act together should

ensure that the needs of the whole family are met and inappropriate caring for young people is

prevented or reduced.

Adults caring for disabled children

Regulations under the Care Act set out how assessments of adults must be carried out to ensure

the need of the whole family are considered. This could include assessing what an adult

needs to enable them to fulfil their parental responsibilities towards their children, or to

ensure that young people do not undertake inappropriate caring responsibilities.

Under the Children and Families Act 2014 a local council has a duty to provide an assessment

to a carer of a disabled child aged under 18 if it appears that the parent carer has needs, or the

parent carer requests an assessment.

4). Inter-agency roles and responsibilities

Local authority social services

Support families and safeguard children who may be at risk of harm, whether from family

members or others. Levels of support can vary within each local authority but they provide

support to families who are in need of additional help and support, which is unavailable from

schools, GPs, other health services, or community-based services.

http://www.familylives.org.uk/advice/your-family/social-services-and-your-family/social-services-

and-your-family/

Health visitor

Health visitors’ work with parents who have new babies, offering support and informed advice

from the antenatal period until the child starts school at five years. They may work in teams or

have sole responsibility for a caseload derived from the local area or a general practice list; they

are usually based in children’s centres, surgeries, community or health centres. Health visitors

visit parents through a minimum of five universal home visits from late pregnancy through to a

developmental assessment at two years.

http://ihv.org.uk/families/what-is-a-hv/

The five key visits are those that all families can expect under the universal level of service.

They are also mandated (i.e. local authorities have committed to deliver) as part of the first 18

months of the transfer of commissioning:

Antenatal

New baby

6 – 8 weeks

9 – 12 months

2 – 2 ½ years

https://www.england.nhs.uk/ourwork/qual-clin-lead/hlth-vistg-prog/

School nurse

School nurses work across education and health, providing a link between school, home and the

community. Their aim is improve the health and wellbeing of children and young people. They

work with families and young people from five to nineteen and are usually linked to a school or

group of schools.

https://www.healthcareers.nhs.uk/explore-roles/public-health/school-nurse

Midwife

Midwives provide care and support to women and their families while pregnant, throughout labour

and during the period after a baby’s birth.

https://www.healthcareers.nhs.uk/EXPLORE-ROLES/MIDWIFERY/MIDWIFE

Young Carers

A young carer or their parents can seek support from the local authority. Once help has been

requested, a social worker from the local authority must visit and see if the young carer needs

any help.

-Peer support for young carers is available on YC Net to get advice and support from other young

people.

-The Citizens Advice Bureau provides comprehensive information on money, benefits and

rights.

- The NHS has information to support the needs of young carers, including information about

carer’s assessments, respite and the rights of young carers.

http://www.nhs.uk/Conditions/social-care-and-support-guide/Pages/who-can-help-young-

carers.aspx

Childminders

A childminder is somebody who provides childcare for children in the childminder's own home for

more than two hours a day. In England Childminders must be registered with Ofsted.

Childminders in Wales must be registered with CSSIW and in Scotland; they must be registered

with the Scottish Care Inspectorate.

https://www.childcare.co.uk/find/Childminders

GPs

General practitioners (GPs) treat all common medical conditions and refer patients to hospitals

and other medical services for urgent and specialist treatment. They focus on the health of the

whole person combining physical, psychological and social aspects of care.

https://www.healthcareers.nhs.uk/explore-roles/general-practice-gp

UCLH CAPES (Children of Adult Patients Emotional Support) service

The CAPES team are a multi-disciplinary team consisting of, Psychotherapists, Psychiatrists and

Play Specialists. They are based in the Paediatric & Adolescent Division of UCLH. The service

offers emergency emotional support for Children (aged 0-18) of Adult patients with life changing

conditions/ illnesses, acute critical illness and palliative/sudden bereavement care needs, to help

them cope in these difficult situations. They can support staff working with the patient regarding

the needs of the children, or work directly with the patient (where possible) and family to help

prepare and support the children during these stressful times. Whilst they cannot offer long-term

support they are able to sign post families on to other relevant services for further support in the

community. Occasionally it may be appropriate for CAPES to offer a follow up appointment.

For patients with a cancer diagnosis please check that there is no current involvement from the

adult psychology team based in the Macmillan Support Centre.

Please be aware your department will be charged a one off £250 for each referral.

See UCLH intranet for referral form and contact details.

http://insight/departments/SpecialistHospitalsBoard/PaediatricDivision/CAPES/Pages/default.asp

x

5) Developmental Stages

6. Equipment and forum advice

Equipment Providers

This article provides general advice and examples of types of equipment that could help with everyday tasks such as:

Adapted cots Lightweight buggies Adapted highchairs

https://www.nidirect.gov.uk/articles/equipment-parents-disabilities

Remap can provide bespoke equipment which is not available on the mainstream Examples include an adapted pram for a wheelchair user.

https://www.remap.org.uk/

Disabled Living Foundation is a charity that provides impartial information and advice on independent living aids. Its ASKSara service helps you find products.

https://www.dlf.org.uk/ https://asksara.dlf.org.uk/?gclid=CLqXoK7O4bACFUIOfAod0k3U1A

Disabled parent charity provides advice on equipment both through its publications and informal forum.

www.disabledparent.org.uk

Cotswold Cots: Make cots specially designed for wheelchair using parents/carers. It is high enough to get legs underneath and the bars of the cot slide open sideways in a ‘concertina’ style. Getting legs underneath means it is possible to sit facing the baby and get them in and out of bed without having to lift them over the top of the cot.

www.cotswoldcots.co.uk Grawkins Rock Close, Carterton, Oxon. OX18 3BP Tel: 01993 842885

Chicco 360 bucket-seat type highchair: Attaches to the table, making it easy to move close to and around without legs getting in the way of a wheelchair. It also swivels 360 degrees so baby can be seated in positions to look all around the room.

Multiple suppliers https://www.chicco.co.uk/

Hippychick Hipseat: Back supporting belt to assist with carrying child naturally on the hip. Can be adjusted to whichever side is most comfortable for the wearer.

https://www.hippychick.com

Tel: 01278 434440

Swivelling car seat: The Maxi Cosi car seat can swivel left and right which may make it easier to get a child out of the car. It has various position for the child to sit or sleep.

https://www.maxi-cosi.co.uk/gb-en/car-seats/axiss

Forum advice

Review of 10 parenting products from a mother with spinal cord injury (cot, harness, buggy)

https://blog.themobilityresource.com/blog/post/10-amazing-products-for-parents-with-disabilities

Mumsnet Forum with opinions and advice about equipment and products available

https://www.mumsnet.com/Talk/disabled_parents/1372953-Aids-helpful-baby-equipment-for-disabled-parents

Resources available at NHNN:

Baby dolls x3 Nappies Baby clothes Bottle

These can be found in NRU gym (cupboard in back of room) Publications purchased from disabledparent.org:

Carrying a baby or a child on a wheelchair; a practical guide for disabled parents

One handed parenting; a practical guide for new parents

Band 6 OT peer group Band6OTs@gmail.com Please contact any member of the group or via the email address above, if you would like to contribute information to this resource. Last reviewed: 28/08/2018