About social care
If you or someone you care for has MS, you may be able to get support and services that help you lead an active and independent life.
Social care is the support you can get outside of the Health Service (NHS). It's provided by your local council (or health and social care trust in Northern Ireland). It can include information and advice, equipment, someone to help you in your home, residential care and support for carers.
Social care services are changing. There's much more focus on offering people more of a say in the support they need.
Explore MS, social care and your rights
Getting social care
To get social care services, you first need to contact your local council. In Northern Ireland you contact your health and social care trust. If we talk about the 'council', we mean your local trust if you're in Northern Ireland.
Your council will look at, or 'assess', what you need. How you're assessed depends on your council. All councils must publish information on how they assess your needs. You can ask them to send you a copy, find it on their website or in your local library.
Preparing for an assessment
Before you can get support, you have to show your council what you need help with. It's important that you're prepared before you have your assessment. You can get help with this.
There are local organisations of disabled people and centres for independent living that can support you with your assessment. Your local council may also be able to suggest support groups for you to contact.
Before your assessment, you might want to think about:
- what you'd like to do but can’t
- how much help you need and how often
- how you'd like to get the help you need.
You may find it useful to keep notes before your assessment. Use these to record what you can and can't do and what you'd like to be able to do if you had the right support.
Making a note of how often you do certain things and what you struggle with gives you an idea of what help you feel you need. This will make it easier to explain things to the person doing your assessment.
When you write down your needs, remember:
- If you need help with something, say so. If you can do a task but it's a struggle, make that clear, even if it's something you can manage.
- Don’t underestimate the time something takes – if you're not sure, time it. Be honest. If it takes an hour to have a bath, write one hour.
- Think about how on a bad day doing things might take longer. If it does, say so.
- Don’t think just of the ‘essentials’, like getting up, getting food, going to bed. You can ask for help so you can visit friends and family, have a social life, look after your children, go to the pub, attend an educational course and whatever you'd do if you had support to help you do it.
- Don’t assume the person doing your assessment will have a good understanding of MS, or how it affects you. You might have very different needs to someone else with MS, and you're the expert in your situation.
Booking an assessment
To decide if you qualify for support your local council will do an assessment of your needs. The results of this assessment are used to make a care and support plan for you.
The law says a council must give an assessment to anyone who seems to need care or support. If you're turned down for one you can appeal against this.
Does a member of your family or a friend give you your care? If so, they too have a right to have your council assess what they need.
Some carers provide care for a few hours a week, others for 24 hours a day, every day. Your carer doesn't have to be living with you. Your carer's assessment will look at:
- Are they happy to carry on being your carer?
- Is caring affecting any family responsibilities they have?
- Is caring affecting whether they can work or have training or education?
- Is it getting in the way of their social life, health or happiness?
The assessment may look at ways to support your carer. For instance, you might be able to arrange 'respite care' to give your carer a break.
Your care and support plan
Your care and support plan (sometimes known as a care plan) is your guide to what money, services or equipment you need. It's based on what your assessment found you need.
Your plan will also say how much money your council has decided it will give you to pay towards services you need.
You can make your care and support plan yourself, helped by friends and family, or you can ask your social worker or an independent adviser ('advocate') to help you. It can be a written plan, or, if you struggle with writing, you can make one using video, audio or pictures.
Your council should also make sure your plan looks at how your needs might change over time and what needs to happen during an emergency.
Download our booklets on social care
For more information about care and support plans, see our booklet Social care: getting support from your council.
There are different versions for each country of the UK:
Your rights under the Care Act 2014 (England)
The Care Act 2014 brought in steps to make the care and support system for people affected by MS better. This includes giving carers the right to have an assessment of their needs. It also means there'll be an upper limit (or 'cap') on how much you can be charged for care in your lifetime.
The Care Act was brought in in two parts. From April 2015 there have been:
- a set of standards for local councils to use when they decide if you qualify for care and support
- new rights for carers
- deferred payment agreements for when you must pay for your care
From April 2016 there's been a ‘cap on care costs' to limit how much you must pay towards your care and support.
Your rights under the Social Services and Well-Being (Wales) Act 2014
The Social Services and Well-Being Act was passed by the National Assembly for Wales. It's changing how people in Wales get care and support.
For the first time, there are separate Welsh laws around social services. Among the changes the Act brings in are:
- stronger protection for people from neglect or abuse
- changes in how councils decide if you qualify to get support from them
- the right for carers to have their needs also looked at
These changes will be introduced slowly. The first began in April 2016, one year after changes in England.