Carers Information Pack
Supporting someone with a mental health problem can be difficult. Even before you start thinking about looking after yourself you may be faced with questions and decisions to make about a lot of complex issues.
The information sheets contained in this pack are intended to help you find the support you need in your caring role. If you need further information there are a number of different contact numbers and addresses that can help you.
If however you are not sure what to do or just want to speak to someone about your caring role you can phone the Mental Health Carers Team on 0113 2954445.
We have decided to produce this pack as a series of separate sheets as information often goes out of date quickly. If necessary you can download an ‘updated sheet’ by visiting our website at www.leedspft.nhs.uk and go to the page for carers. Alternatively you can phone the Mental Health Carers Team to ask for the ‘updated sheet’
Carers Information PackContents
Sheet Number
Sheet Name
1 Guide to pack
2 Who Is a carer
3 Rights as a carer (assessments and Carers Charter)
4 Where to get support
5 Who’s who in mental Health
6 Planning care
7 Confidentiality and information sharing
8 Addressing Concerns
9 Tips for Carers
10 What to do in a Crisis
11 Questions to ask the Psychiatrist
12 Recovery and Carers
13 Your Details and Contacts
Who is a Carer?A Carer is a person who provides care /support for someone else, who, because of long term physical illness, mental illness, impairment or old age, may not be able to care for him or herself.
A Carer is someone who is not paid for the work that they do.
A carer can be:
Brother/sister • Husband, wife or partner
Relative, friend or neighbour • Son/Daughter
Graphic put here
Rights as a CarerIt can be a difficult process to go through, admitting being a carer, admitting how much it involves. However,
Carer’s Assessment and your Rights
If you give substantial and regular support to someone in their home, you are entitled to have an assessment of your own needs so that you can get services to help you provide the support you give.
By law, you are entitled to an assessment even if the person you care for doesn’t want or need services themselves. It is important to realise that this is not an assessment of your ability to care or your financial status. If the assessment is offered at the appropriate time and by someone willing to spend time helping you through it, it should enable you to identify where you may need support and how to get it. This should improve your ability to cope with your role.
The Care Coordinator may offer the assessment during the Care Plan meeting. If not, then it is perfectly all right for you to request one when you are ready. If it is offered in front of the person you care for you might feel uncomfortable accepting it. If you do turn it down this does not stop you approaching the Care Coordinator later to accept. You may find that discussing different issues helps you to be clearer about your role, your needs and what if anything can be done to lighten the burden
How to get an AssessmentIf the person you care for is not getting any services but you would like an assessment of your needs, then call Leeds Social Care via the Telephone Centre 0113 222 4401 (carers of adults) 0113 222 4403 (carers of children) and ask for a Carer’s Assessment. The person you speak to will pass on your details to the right team.
If the person you are looking after already attends an Adult Social Care or a Mental Health facility they will have a care plan of their own which may be due for review in which case you could ask for a Carer’s Assessment at that point. But you do not have to wait – you can ask now by phoning the Telephone Centre
If the person you care for is receiving a specialist mental health service then they will have a ‘Care Programme Approach’ coordinator. This might be a nurse or a social worker. (OT or Medic)The CPA coordinator will either do carers assessment for you themselves or arrange for it to be done.
If Adult Social Care carry out an assessment of the person you care for, you will be asked if you would like to have a carer’s assessment. You can have your assessment in the presence of the person you care for or on your own
Carers CharterLeeds and York Partnerships Foundation Trust are members of Leeds Carers’ Charter (*Need to understand the relationship with York services here). As a carer you can expect the following standards of care whenever you come into contact with our services.
To be recognised, identified and valued for your caring role and be treated with dignity and respect.
To access, or be signposted to, relevant and up to date information about the support that is available for you as a carer.
To be informed by our staff about the right to a carer’s assessment and to be referred appropriately - if you wish.
To have your own health needs recognised and to be supported to maintain your physical, mental and emotional health and well-being.
To be included (with the permission of the person you care for) as a valued partner in the planning and delivery of his/her treatment and care, and in particular in discharge planning.
To have the right to choose the level of care you are able to offer, depending on your age and ability.
To be considered as an individual and to have services strive to reflect your own needs.
To have opportunities to comment on, and be involved in, the wider planning and evaluation of services
Where to go for supportThere are organisations that provide different types of specialist support for carers in Leeds. To help you get the right support as quickly as possible the following guide should prove useful.
People with dementiaIf you care for someone who has dementia you can contact the Alzheimer’s Society who provide a range of services for carers and the person they care for.
They can be contacted on 0113 2311727
Or by visiting their website (staff net)
People with Learning DisabilitiesCarers Leeds provides a range of support, information, and social opportunities for all carers.
They can be contacted on 0113 2468338
Or by visiting their website (staff net)
People with mental health problemsIf you would like information advice or support around caring for someone with a mental health problem you can contact the Mental Health Carers Team on 0113 2954445
Referral form (staff net)
Young CarersTo find out more about support for Young Carers in Leeds phone Willow Young Carers on 0113 2622851
If you are not sure then phone 0113 2954445 to help you to get the right support.
Below is an introduction to some of the workers that you may come into contact with when supporting someone with a mental health problem.
There may be others, if you want to see the full list you can go to www.mind.org.uk
Psychiatrist
Psychiatry is the study of mental disorders and their diagnosis, management and prevention. Psychiatrists are qualified medical doctors who have specialised and taken further training in 'mental illnesses'.
A consultant psychiatrist can be a member of the multidisciplinary team that plans and delivers patient care; other team members may include a psychologist, a social worker and other workers described in this factsheet.
Psychiatrists are not only hospital based. In some areas, psychiatrists have close links with GP surgeries; others work in community mental health centres or multidisciplinary teams. They work closely with a number of different mental health professionals, such as psychologists, social workers and psychotherapists.
While treatments within psychiatry tend to be predominantly physical, such as drug therapy and electroconvulsive therapy, a combination of treatments may be used; for example, drug therapy and psychotherapy.
How to access: Your GP can refer you to a psychiatrist within your NHS trust.
Psychologist
Psychology is the scientific study of human behaviour and mental processes. It is concerned with the thoughts, feelings and motivations that underlie human action. Although there are different types of psychologist, clinical and counselling psychologists are included in this factsheet because of their relevance to mental health.
Social workerSocial workers are involved in mental health in a number of ways and work in a variety of settings. Local authority social services are tending to move away from generalist social workers towards specialist teams, including specific mental health social service teams. However, there are no clear guidelines about the level of social services that people are entitled to expect and there is wide variation between geographical areas in terms of the services provided.
Social workers should be able to offer advice on practical matters such as day care, accommodation and welfare benefits, or can link you with appropriate services. Some may offer counselling. Hospital social workers are attached to both general hospitals and mental health hospitals. A psychiatric social worker is a specialist who works closely with individuals and families to support them through crises or in the longer term. (do we need anything about their statutory role re detention?)
Information taken from ‘Who’s who in mental health: a brief guide’
Planning CareIf you care for someone who has severe mental health needs or has a range of different care needs then they will be appointed a Care Coordinator under the Care Programme Approach (CPA)
A care coordinator will be a mental health worker who will be trained and identified to coordinate the care of the person with mental health needs.CPA is a way that person mental health needs are supported in a planned and coordinated way.
Someone might receive support under the CPA if they:-
are diagnosed as having a severe mental disorder are at risk of suicide, self-harm, or harm to others tend to neglect themselves and don't take treatment regularly are vulnerable. This could be for various reasons, such as physical or emotional
abuse, financial difficulties because of their mental illness or cognitive impairment have misused drugs or alcohol have learning disabilities rely significantly on the support of a carer, or have their own caring
responsibilities have recently been detained under the Mental Health Act have parenting responsibilities have a history of violence or self-harm
A person who does not satisfy the criteria for receiving support under the Care Programme Approach will still have their care managed through having a care plan and this care plan will be reviewed regularly.
As a carer you can expect to contribute to the care planning of the person that you care for. You may do this by attending care plan meetings or by having the opportunity
As a carer you can expect to contribute to the care planning of the person that you care for. You may do this by attending care plan meetings or by having the opportunity to discuss your needs and the ‘cared for’ persons needs with a mental health worker.
In some instances you may not be able to have all information about the cared for person shared with you; this is because of confidentiality (more information about this can be found on our Information Sheet Entitled Confidentiality.
For more information on the Care Programme Approach and Care Planning contact the person who provides the support for the person you care for or contact the Mental Health Carers Team on 0113 2954445.
ConfidentialityAs a carer you will need to have some information from mental health services about the person you care for so that you know what to do if things go wrong or how best to support them to stay well.
What level of information you receive will depend on what the person you care for agrees to share with you and others. This can be difficult and frustrating when you feel that you need to know more and no one is prepared to give you the answers you need.
Confidentiality and information sharing is a very complex area as everyone is entitled to privacy.
All workers in the mental health profession are bound by the law and codes of practice, so breaking confidentiality is a serious matter and can only be done under certain circumstances.
When confidentiality can be brokenIn some instances workers may be able to share information about the service user even if he or she does not want this to happen. This may be because they feel that the service user could be a risk to themself or others or because the service user is not able to make decisions for themselves. This is sometimes called capacity.
What you can expect.You will receive general information about mental illness and the treatments used. You can speak to the team and discuss your experiences, and you will be able to ask questions or request information about mental illness. This information may however be general and not specific to the person you care for.
You will be expected to give information to the team. If you have information about the person you care for, or have any concerns about their mental health, their behaviour or their treatment it is important that this is given to the care team. They can use this information to understand the service user and their illness better and adjust the treatment plan accordingly.
As a carer you also have the right to have information that you provide, either about yourself or the person you care for, kept confidential. Sometimes it may be difficult to to maintain confidentiality where it is obvious that information has come from someone close., If you are unsure you should discuss your concerns about sharing information with a mental health worker connected to you and the cared for person.
For more information on confidentiality and information sharing
Addressing ConcernsEven with all our will and determination to provide an efficient and effective service, from time to time things can go wrong. When this does happen staff will deal with the immediate situation and all the relevant parties, including carers, will be informed as necessary.
If a situation arises where a carer or manager feels that a ‘fact find’ should be done, this should take place within 24 hours. The ‘fact find’ is to determine what actually happened. From this, a decision will be made whether to undertake a ‘critical incident review (CIR)’ or an ‘internal review’.
The purpose of the review is to address any finding and rectify any mistakes identified.
If a CIR is undertaken, then the strategic health authority, which is the headquarters of the NHS locally, will be informed, who in turn should offer necessary advice and leadership
Requesting a change of practitioner/second opinionIf a patient of this trust is not happy with their diagnosis or is simply not gelling with the existing health professional involved, they could request a change of practitioner and/or a second opinion. The existing health professional can advise on this.
Patient Advice and Liaison Service (PALS)PALS is a confidential and free service to guide you through the different services available at Leeds Mental Health Trust and other local services and help resolve any concerns you may have. If PALS are unable to help you resolve your concern they will support you to make a formal complaint to ensure the matter is dealt with appropriately.
Independent Diagnostic OpinionBefore going down the route of seeking an independent second opinion it is worth considering the reason for wanting this, and whether the current practitioner or PALS can help in any way. Nevertheless, Spire Health Care—tel: 0800 434 6600 www.spirehealthcare.com/leeds or cygnet Health Care—tel: 0845 070 4170 www.cygnethealth.co.uk are two such private health care providers who could offer an independent psychiatric diagnosis.
Complaints and complimentsIt is important to understand that raising concerns not only helps you with your personal situation or the situation of the person that you are caring for, but is a means to make improvements to services. Your concerns may help us to re-think how we deliver that particular aspect of service. Similarly, it is important for you to tell us when we have got it right.
How to make a complaint or compliment By speaking to a member of staff who is providing your care Through PALS Through the Complaints and Claims Manager:
What happens when I make a formal complaint? Your complaint will be acknowledged within 3 working days Your concerns will be thoroughly investigated The Chief Executive will respond to you within 25 working days, or longer
if agreed with you.
LPFT Complaints Manager
Headquarters, 2150 Century Way, Thorpe Park, Leeds, LS15 8ZB. Tel: 0113 3055973
Independent Complaints Advocacy ServiceOffer you support with complaints about the NHS. Tel: 0845 120 2734
Tips to support someone who has mental health difficultiesThese tips may be helpful in offering support to a friend or family member who has mental health difficulties. These hints are from carers we have had contact with and carers team members.
You are the person who is offering support to your family member/friend and who therefore has an understanding of when these tips apply to your situation. You are the expert in the person you care for, what motivates them and what experiences they and you have had.
Understanding the illness
Each person with mental health difficulties is individual and the support they need will be different and individual to you and them.
Mental health difficulties are real and the person cannot help such symptoms as feeling depressed, hearing voices, having delusions or hallucinations.
People will go up and down from day to day sometimes from hour to hour. It can feel as if there is no progress. Look for objective signs of improvement:
- Is the person you are offering support to getting up at a reasonable time?
- Is the worst day now better than the worst day a month ago?
- Is the person doing more activities e.g. Housework, going out, seeing friends, watching television or reading?
Improvement is not straight forward and people will have days where they feel OK and other days where they feel awful. It is important to look for progress in terms of how someone has been over a period of time e.g. a week/month not just one day.
It is important that a person with mental health difficulties has a level of responsibility they can cope with. Sometimes there can be a temptation to take over all responsibilities in the house such as cooking, cleaning, and caring for children, washing and shopping. This may not always be helpful and where possible a person should have some responsibilities for everyday living, but not so much that their mental health difficulties get worse.
The person you offer support to may also need their own time and space so that both of you retain your own identities
It is important to be patient and not to expect mental health difficulties to clear up quickly. The development of these problems can sometimes be sudden, but may often happen gradually, over a period of time. Once the person you care for begins to receive the help they need it can take a while to improve. In general a steady improvement is more sustainable than a quick recovery.
Supporting someone who has a type of Dementia Dementia is a general term for a physical deterioration in the brain and covers
conditions such as Alzheimer’s Disease and other types of Dementia
In general people with dementia lose the ability to form short term memories and will gradually lose the ability to look after themselves
Memory services and the Alzheimer’s Society provide information about how to offer support to someone with Dementia but unlike other mental health conditions it is unlikely some will recover from this condition
Keeping yourself well There will be times where you feel stressed and you may not be as patient as
you usually are. You may shout/argue/be short tempered/ be withdrawn or do other things you would not usually do. This happens to a lot of carers, leading to feelings of guilt, but can be almost inevitable because of the amount of stress carers experience. Think about how you could best get rid of or deal with this stress?
Some suggestions: Take a hot bath Go for a walk Put on your favourite music
It is important (where possible) to take some time for yourself on a regular basis. This could mean spending time watching television, going for a walk, reading, lying down, swimming; anything that helps you cope and feel less stressed.
This can be one of the hardest things to do but the benefits can include feeling less stressed, less worried, happier, being more understanding and patient and being able to keep things in perspective more easily. It can make it easier to offer support to the person you care for because you are not exhausted by always putting the needs of the person you care for first.
All of us can lose perspective when looking after a family member or friend. Mental health workers recognise this but will have a more objective view of your situation because they are not emotionally involved in the situation in the same way friends/family are.
This may be a positive factor as the mental health worker can see different perspectives family and friends may struggle to see. This information could be helpful in changing a difficult situation.
You may find you disagree with some of the above tips and you are the person who knows you and the person you care for best. You may have other tips. If you have please could you send them to Carers Team, South Wing, St Mary’s House, St Mary’s Road, Leeds LS7 3JX. so that we can add them to the above list.
A checklist for carers of people with mental health problemsWorking in partnership with psychiatrists and carers(Taken from the Royal College of Psychiatrists – Partners in Care campaign)
Questions to ask the psychiatrist
Carers need information and psychiatrists are busy. Carers may not always find out what they need to know about the person they are caring for. This checklist is designed to help you get all the information you need about the diagnosis and treatment of the person you care for.
You may be able to get some of this information from other members of the clinical team involved, or from written information that they can provide.
If the person gives you permission, the psychiatrist will be able to give you information about their condition and care.
Although you may not want to ask all the questions listed, you may find that they help you in preparing to meet the psychiatrist and the mental health team. Not everyone will need all the answers to all these questions at the same time. You may have questions that are not covered in this leaflet. Even so, it should provide a helpful framework for deciding what you do need to know.
About the illness
What is the diagnosis or problem?
If a diagnosis has not yet been made, what are the possibilities?
Why has this happened to them?
Will they recover?
If a diagnosis has been made
What symptoms suggest this diagnosis/illness?
What is known about the causes of this disorder/illness?
What is likely to happen in the future? Will it get better or worse?
Where can I get written information about this disorder?
About the assessment
What assessments have already been done?
Are there any other assessments that might be needed?
Are there any physical problems that have been discovered? If so, what will need to be done?
Have culture and background been considered?
Care Programme Approach (CPA)
What is the CPA?
What does the CPA mean?
Is the person on the CPA? If not, why not?
Will I be involved in the CPA?
About care and treatment
What are the aims of the care and treatment?
What is a care co-ordinator?
What part will the care coordinator play in the person’s care?
Who else will be involved in the treatment?
What is your plan for treatment?
For how long will they need treatment?
Would talking treatments (e.g. cognitive behavioural therapy, family therapy) be helpful? If so, are they available locally?
What happens if they refuse treatment?
Sharing of information
Have you asked them about how much information they are happy to share with me?
Will I be informed about important meetings concerning their care and treatment?
Can I see you on my own?
Would you like to ask me for any other information about them or the family?
Can I tell you things that will not be shared with the person or other members of staff?
Are their views on confidentiality clearly marked in their notes?
Care and treatment
What can I do to help?
Are there any local self-help or carers’ groups that can help me understand the illness?
How can I get advice and training in the day-to-day management of the illness?
Are there any local groups that can provide support?
Getting help
How can I get in touch with you?
How do I arrange to see you?
Who do I contact if I’m worried about their behaviour?
What do I do if I’m worried that they are becoming ill again?
Who do I contact in an emergency? What help might be available?
How can I get a second opinion?
Carers
What is the difference between a carer, a nearest relative and a nominated person?
I understand that, as a carer, I am entitled to an assessment and care plan of my own. Who should I speak to?
If I have specific needs of my own, who should I ask?
If I need help, to whom should I turn?
Medication
What medication is to be used, and how?
Is the lowest effective dose being prescribed?
Can a low dose be taken at first and increased if necessary?
How often will the medication be reviewed?
What should the benefits of this medication be?
In the short-term
In the long-term
What are the possible side-effects of this medication?
In the short-term
In the long-term
Managing the medication
Why have you chosen this particular medication?
How long will the medication have to be taken for?
Are there any other medications that could be used if this one does not work?
What symptoms might mean that the dose should be changed?
What should I do if they experience unpleasant side-effects
What will happen if they stop taking the medication?
Do you have any written information about this medication to give me?
Hospital treatment
Do they need to be admitted to hospital? If so, for how long?
If they have to go into hospital, which one will it be?
Will they be on a locked ward?
If they get short-term leave from hospital, when and how will I be informed?
How often will I be able to see them?
Discharge from hospital
What arrangements will be made for their care and monitoring after discharge from hospital?
If I am not able to look after the person when they are discharged, what will happen?
Am I expected to help with anything, especially medication?
Do you know of any self-help techniques that will help their recovery?
If not admitted to hospital
Do they need to be admitted to hospital?
Are there any alternatives to hospital admission?
Any other questions
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RecoveryI need to write this
Your Details and ContactsYour name:
Care Coordinator/ Keyworker:
Contact Number:
Consultant Psychiatrist:
Contact Number:
Crisis Contacts:
SPUR/abbreviation, explain who they are
Mental Health Carers Team 0113 2954445
Carers Leeds 0113 2468338
Alzheimer’s Society 0113 2311727
Willow Young Carers 0113 2622851
