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Long-term residential care
It can be difficult to focus on the possibility that long-term care may one day be required. Often the issue only arises when people are suddenly faced with the task of finding a suitable residential care home and perhaps also paying for it. In situations like this, many feel unprepared and find it very stressful. For most people, support to remain at home is the preferred option. Others find they are having trouble coping at home and want the security provided by residential care, where appropriate services and support are available.
If a move into a care home becomes necessary, it is usual to have concerns and to find the prospect and process stressful and emotional. In fact, there can be many advantages to living in a residential community and many people find that they enjoy the social aspect of living with others in a similar situation.
You may find it useful to talk to others about the many emotions that you will be feeling as you consider the option of residential care. It is not uncommon for carers to feel guilty and selfish for not ‘soldiering on’, but you have to think about what is best for you as well as the person you care for. It often helps to chat to families of other people with MS who are already in residential care, to find out how they coped early on. Do remember that just because the person you care for goes into residential care, you don’t stop caring for them. Many residential homes welcome daily support and contact between family carers and residents, with carers assisting paid care staff if they want to do so.
The MS Society has published a useful guide to finding and paying for long-term residential care, which includes a pull-out checklist to help when you are choosing a care home.
FURTHER READING
Residential care and your options
MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am-4pm)
Age UK and Counsel and Care both publish a range of factsheets about paying for care home fees
Palliative care
Palliative care supports people to have the best possible quality of life. It looks at all the needs that a person might have. This could be by managing any symptoms that cannot be cured, but also by taking into account psychological, spiritual and family needs.
People used to only think of ‘palliative care’ as a part of cancer care, but increasingly, it’s also recognised that it can be helpful for people with other conditions, including MS.9, 10 Many people think it is only for someone near the end of their life. In fact, with a long-term condition such as MS, it can help at other times too.
Palliative care can be provided in hospices, hospitals and at home.
Many health and social care professionals take a palliative care approach to helping people with MS. Sometimes, specialist palliative care professionals might advise them on how best to manage overall care.
Unfortunately, access to specialist palliative care depends on what services are available where you live. But wherever you are, you need a ‘specialist palliative care assessment’
to access these services. A GP, MS nurse of other health or social care professional should be able to make a referral for this. In some areas, you might be able to refer yourself for this assessment.
Your Primary Care Trust (England), Health Board (Scotland and Wales) or Health and Social Care Trust (Northern Ireland) should have the contact details for a community palliative care team who can carry out the assessment.
More information about palliative care is available from the National Council for Palliative Care. In Scotland, the Scottish Partnership for Palliative Care can help. i
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End-of-life care
End-of-life care focuses on the care and treatment of people who are dying. It aims to be sensitive to personal, cultural and spiritual values, and to support carers, family and friends through the bereavement process.
Professionals use three main documents to guide their work:
Preferred Priorities of Care
This is a document that the patient keeps with them if they are cared for in a number of different settings. It details their preferences about the care they would like to receive and their choices about where they would like to be when they die.
Gold Standards Framework This tool is used by many health care professionals across the UK and aims to optimise the care for patients nearing the end of life, promoting effective joint working between primary care teams and specialist staff.
Liverpool Care Pathway
This tool is based upon best practice within the hospice movement and focuses on the care of patients in the last days or hours of life. It includes symptom control guidelines and information for relatives.
Effective palliative and end-of-life care can remove the need for a move to a nursing home or hospital setting in the latter stages of someone’s life.
Talking to someone about the care they want to receive at the end of their life can be difficult. Dying Matters has advice on how to talk about death and dying.
Hospice care
Within hospices you will find a range of palliative care services, such as pain control, symptom relief, skilled
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nursing care, counselling, complementary therapies and spiritual care, as well as ongoing support for family and friends.
Staff and volunteers work in multi-professional teams to provide care based on individual need and personal choice.
An alternative to residential hospice care may be to have hospice care at home. Specially trained nurses and doctors visit patients in their own home, providing the medical and nursing care that they would receive if they were an in-patient.
This makes it possible for people to spend the last weeks or months of their illness in familiar surroundings, with their family and friends around them.
To learn more about options for palliative and end-of-life care in your area, contact your GP or MS nurse. Appropriate specialised care can provide comfort in the last few days of life wherever someone wishes to be: a hospital, a hospice, residential care or at home.
Planning ahead – the legal paperwork Power of attorney
A power of attorney is a way of planning ahead so that your wishes are respected, if at some time you cannot express those wishes.
When you set up a power of attorney, you choose people you trust to look after your affairs and take decisions on your behalf. It is only used if you can no longer make those decisions yourself. It’s a sort of insurance – you might never need it, but if you do, it’s a vital way to get your wishes heard.
In England and Wales, the documents you complete are called Lasting Power of Attorney (LPA). There are two types of LPA that you might want to make. In one, you write down your wishes for your ‘health and welfare’.
The other covers ‘property and financial affairs’.
In Scotland, documents called a Welfare Power of Attorney and a Continuing Power of Attorney work in a similar way.
In Northern Ireland, you can set up an Enduring Power of Attorney. This only covers financial matters, not personal care arrangements.
A Power of Attorney becomes a legal document once it is registered with the Office of the Public Guardian (or the Office of Care and Protection, in Northern Ireland).
More about making a Power of Attorney For England and Wales, the Office of the Public Guardian has a series of guides on Lasting Power of Attorney.
For Scotland, the Office of the Public Guardian (Scotland) has a series of guides on Power of Attorney.
For Northern Ireland, the Office of Care and Protection website has a leaflet on Enduring Power of Attorney. Citizens Advice also has information. If you don’t have access to a computer, call the UK Information Team on 020 8438 0799 or the MS Society Northern Ireland on 028 9080 2802.
Advance decision to refuse treatment
As the name suggests, an ‘advance decision to refuse treatment’ lets you record in advance your wish to refuse specific treatments in specific circumstances.
Like a power of attorney, an advance decision to refuse treatment (ADRT) would only apply if there comes a time when you can’t make or communicate your decision.
In England and Wales, a valid ADRT is legally binding on a health care professional. ADRTs are covered by the Mental Capacity Act, so health care professionals must act according to your wishes. However, the ADRT cannot direct anyone to do something illegal. It cannot, therefore, be an instruction to actively shorten life – euthanasia and assisted suicide are illegal in every nation in the UK.
In Scotland and Northern Ireland, an ADRT does not have the same legal standing – ADRTs are not covered by the Adults with Incapacity (Scotland) Act 2000, and there is no equivalent law in Northern Ireland yet. However, your wishes in the ADRT should be taken into account by medical professionals. And if they are ignored, it might be considered illegal under existing law.
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Statement of wishes and preferences
A statement of wishes and preferences can cover areas of life that are not included in a power of attorney or advance decision to refuse treatment.
You might use one of these statements to explain your feelings, beliefs and values. If you can’t express these in future, this can help the people caring for you to make the right choices on your behalf.
They are sometimes referred to as ‘personal statements’
or ‘advance statements of wishes and preferences’.
(In Scotland, a ‘personal statement’ is not the same as an ‘advance statement’. An ‘advance statement’ in Scotland comes under the Mental Health Act and specifically applies to treatments for a mental health issue.)
A statement of wishes and preferences is not legally binding, but care professionals must take into account what you say in the statement. It only applies if you can’t make these decisions at the time you need the care.
You can write down the statement or make a sound recording of you speaking it. You could even simply tell your wishes to family and carers, but writing or recording it is a better way to be sure your views are heard.
FURTHER READING
Support and planning ahead – for people severely affected by MS Living with the effects of MS
MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am-4pm)
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Writing a will
If someone dies without leaving a will it can cause problems for surviving relatives, sometimes leading to expensive legal costs if they need to be resolved. In most cases it is advisable to have a will drawn up with advice from a specialist solicitor who can explain the potential consequences of any bequest.
Within a will, an individual can choose the people who they want to be responsible for managing the distribution of their assets when they die – the ‘executors’. If a will is not made, a person’s estate will be passed on according to a scheme laid down in law.
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