Looking after a person with severe disabilities is exhausting. Nobody can do it all on their own. And the normal demands of everyday life don’t go away. So, when your family member becomes disabled it is important to get help, both for your own sake and so you can be there for the rest of your family. It’s also good for the person’s own wellbeing to have contact with other people.

You may be eligible for Carer’s Allowance if you meet all the following conditions: you look after someone who gets a qualifying disability benefit. you look after that person for at least 35 hours a week. you are aged 16 or over. You can find out more here.

Some families may not need outside help if they have a big enough network of family and friends to call on. If you are not in that position, you will need to ask your local Social Care services for help. They should provide a care package where people come into your home to help you.

  • Don’t be afraid to keep asking for what you need, and to reject unsuitable people. Some carers are fantastic, but some are not. Both you and your family member need to feel comfortable with the people who come into your home. The carers should be willing to work with you using the methods that are best for your family.
  • Some families prefer to opt for direct payments, where you are given a budget to employ your own carers. This gives you some choice over who helps with the care required and gives more flexibility to arrange care at the times you need it.

Whichever system you choose, the process of getting the right people can take time, and there may be periods when it is difficult. Be persistent, and you will get the right care eventually.

Think about the pattern of help that will suit you best. Perhaps you would like help with getting your family member up and looking after them while you for example take your other children to school. Or perhaps to provide cover during the day so that you can get out or helping to get them bathed or ready for bed. If they wake frequently in the night, you could ask for a night carer who can sit with them so that you can get a good night’s rest. All care packages must be agreed by a funding panel.

You will have a number of professionals involved with decision making and providing evidence about your care needs: this is often referred to as the Team Around the Child or Family.

Social care and support

These are services to help you if you need practical support because of illness or disability.

Social care and support is usually paid for by the local council’s social services department. For adults who need services, sometimes they and their and their families will have to contribute depending on savings and earnings. There is no charge for children who need care through social services.

Types of social care and support include:

  • help at home from a paid carer
  • meals on wheels
  • having your home adapted
  • equipment and household gadgets
  • personal alarms and home security systems so you can call for help (for instance, if you have a fall)
  • different types of housing, such as sheltered housing and care homes

NHS Continuing Healthcare

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.

Where can NHS continuing healthcare be provided?

NHS continuing healthcare can be provided in a variety of settings outside hospital, such as in your own home or in a care home.

Am I eligible for NHS continuing healthcare?

NHS continuing healthcare is for adults. Children and young people may receive a “continuing care package” if they have needs arising from disability, accident or illness that can’t be met by existing universal or specialist services alone. Click here to find out more about the children and young people’s continuing care national framework.

To be eligible for NHS continuing healthcare, you must be assessed by a team of healthcare professionals (a multidisciplinary team). The team will look at all your care needs and relate them to:

  • what help you need;
  • how complex your needs are;
  • how intense your needs can be;
  • how unpredictable they are, including any risks to your health if the right care isn’t provided at the right time.

Your eligibility for NHS continuing healthcare depends on your assessed needs, and not on any particular diagnosis or condition. If your needs change then your eligibility for NHS continuing healthcare may change.

You should be fully involved in the assessment process; the assessment is based around the Decision Support Tool (DST). You will be kept informed and have your views about your needs and support taken into consideration. Carers and family members should also be consulted where appropriate.

A decision about eligibility for a full assessment for NHS continuing healthcare should usually be made within 28 days of an initial assessment or request for a full assessment.

If you aren’t eligible for NHS continuing healthcare, you can be referred to your local council who can discuss with you whether you may be eligible for support from them.

If you still have some health needs, then the NHS may pay for part of the package of support. This is sometimes known as a “joint package” of care.

Respite care

There are specialist respite centres and hospices who will look after your family member for anything from a night to a couple of weeks, so that you and your family can have a break. Your doctor, or sometimes your social worker, can refer you. Your care package should include a number of nights per year of respite care to use as you wish.

Respite care does not suit every family, but it’s an option you should perhaps try. It’s natural to have doubts about something new of this kind, but once they have tried respite care, many families wonder why they didn’t do it sooner. Another option is to have a clause put in to your care package that allows you and your family to go on holiday each year with a carer to assist you.

Additional Support

Having caring responsibilities can put a huge amount of pressure and stress on families and individuals, Carers UK can offer a wealth of help and advice as can our Support Services team.

Young carers can find help and advice from the charity Young Minds. There are also often local groups for young carers, your social worker should be able to help you find information.