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Living with M.E.

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Social care

Can I get social care help at home?

Some people with M.E. are entitled to help at home or in a care home, including home helps, meals-on-wheels or personal care such as help with getting up, washing, dressing, feeding or going to the toilet.

If your M.E. has left you unable to do these things easily for yourself, the first thing you should do is contact your local social services department to ask for an assessment of your care and support needs.

Some local authorities may screen people before agreeing to an assessment so it is worth thinking about your care needs before you make the call. 

Action for M.E. has produced a resource pack 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 - see the 'Explaining how M.E. affects your health' section below.

Your local authority 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.

There are some services the local authority provides that it cannot charge for. But for many services, the local authority may carry out a financial assessment to see if you should pay for, or contribute to, the cost of your care services.


Explaining how M.E. affects your health

Action for M.E. has produced a resource pack 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. 

We've produced two versions of the 'This is M.E.' pack - a PDF copy that you can print off and fill out by hand, and a Microsoft Word copy that you can download and fill out if you need to email it to someone.


Getting your care needs assessed 

When you get assessed by the local authority, as a minimum you may be given information and signposting to other services, and ways that you might find funding to pay for them. However, if your needs meet the national eligibility criteria, your local authority will have to meet these needs.

The eligibility threshold for adults with care and support needs is based on identifying that:

  • your needs arise from or are related to a physical or mental impairment or illness
  • you are unable to achieve two or more specified outcomes as a result of your illness or impairment
  • as a result of being unable to meet these outcomes, there is likely to be a significant impact on your wellbeing

An adult’s needs are only eligible where they meet all three of these conditions.

The specified outcomes measured 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.


Personal budgets

Direct payments and personal budgets are offered by your local authority to give you more flexibility over how your care and support is arranged and provided. They are given to both people with care and support needs, and also to carers.

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.