Social care support
Social care support describes the help provided to people in their own home or in a care home. It may include home helps, meals-on-wheels or personal care - help with getting up, washing, dressing, feeding or going to the toilet.
If you are able to afford to pay for some support at home you could consider employing a personal assistant (PA), carer or cleaner, even if this is just for a few hours a week. You could look into whether you are eligible for any welfare benefits such as Personal Independence Payment (PIP) to help towards the cost of this.
If you cannot afford care privately, the main way to access support is to go through your local council. You can contact your local council and ask for a care needs assessment. Trying to get social care from your local council can be challenging, and how you present your needs can influence how quickly they respond. Please be aware that not everyone who asks for support will be eligible.
- When you initially contact them, make sure to explicitly state: “I am asking for an assessment of my care needs."
- At each stage, be realistic about the worst case scenario that might arise if your needs are not met.
- Our Information and Support team can answer questions and share resources about navigating this process.
- NHS Online offers useful step-by-step information about applying and preparing for a care needs assessment.
Your local council may pay for some or all of your support if your needs meet the eligibility criteria and you have a limited ability to pay for the services yourself. After they have assessed your care needs, they will do a financial assessment to determine how much you would contribute towards your care. Some support options are available to some people with certain specific needs, sometimes free of charge. There is more detailed information on care and support you can get for free at NHS Online.
Explaining how M.E. affects your health
Action for M.E. has produced a resource called This is M.E., in collaboration with North Bristol NHS Trust that will help you think about and explain how M.E. affects your health and what kind of support you need. It should be filled out by the person who has M.E. or the person that knows them best. You can then share the resource with carers, social workers and anyone else who you want to communicate your needs to.
Getting your care needs assessed
Your local council should apply eligibility criteria set out in the UK Care Act 2014 to decide if they can provide social care support. They will meet care needs if a social care needs assessment shows that:
- your needs arise from, or are related to, a physical or mental impairment or illness AND
- as a result of your needs, you are unable to achieve two or more specified outcomes AND
- as a consequence there is, or is likely to be, a significant impact on the persons well being.
An adult’s needs are only eligible where they meet all three of these conditions.
The "specified outcomes" referred to above include:
- managing and maintaining nutrition, such as being able to prepare and eat food and drink
- maintaining personal hygiene, such as being able to wash themselves and their clothes
- managing toilet needs
- being able to dress appropriately, for example during cold weather
- being able to move around the home safely, including accessing the home from outside
- keeping the home sufficiently clean and safe
- being able to develop and maintain family or other personal relationships, in order to avoid loneliness or isolation
- accessing and engaging in work, training, education or volunteering, including physical access
- being able to safely use necessary facilities or services in the local community including public transport and recreational facilities or services
- carrying out any caring responsibilities, such as for a child.
Local authorities do not have responsibility for providing NHS services such as patient transport, but they should consider needs for support when the adult is attending healthcare appointments.
Some people with long-term complex health needs qualify for free social care arranged and funded solely by the NHS. This is known as NHS continuing healthcare, and some people with severe M.E. may be eligible.
The assessment process can be complex but, if successful, the person you care for will have all their health and social care needs funded by the NHS.
For those assessed as eligible, your local authority will decide your personal budget, ie. how much should be spent on your care. Either that could come to you directly via direct payments (someone else can manage your direct payments for you) OR your the local authority can hold the budget for you and use it to employ agencies to deliver your care.
A personal budget or direct payment will be created after an assessment by social services. If the council decides that you need any kind of support, you will receive a personal budget and can choose a direct payment instead of letting them arrange services for you.
If you aren’t able to, or don’t want to manage your own finances, it's possible for another person to manage the direct payments on your behalf.
Paying for care
Social care services can be purchased directly by a person with M.E. or their carer/family support, at their own expense.
Your local council may keep a directory of service providers, including “care brokers” to help you to assess your needs and decide on the services you require. Carers UK has more information on this.