Cerebral palsy in adulthood: what changes with age, and planning ahead

The NHS puts it plainly in its overview of cerebral palsy: the original problem with the brain does not get worse over time, but the condition can put a lot of strain on the body and cause problems, such as painful joints, in later life. NICE guideline NG119 on cerebral palsy in adults goes further. It notes that adults tend to have less fluctuation in their motor skills than children, but that mobility may decrease because of muscle tone, weakness and pain, and that pain, mental health, communication and nutrition can each affect quality of life.

The table sets out the areas NICE names, what can change in each, who can help, and what to ask for. You can take it to a GP appointment.

None of this happens to everyone, and adults with cerebral palsy range from living fully independently to needing support around the clock. A change is not simply something to live with. NICE tells professionals that any change in musculoskeletal function should be investigated to find a treatable cause. A hip that has started to hurt, meals that take longer, or more chest infections this winter than last are all reasons to ask.

Keep a short note of what you notice and when: the date, what changed, and anything that seemed to set it off. The person with cerebral palsy may notice a change before anyone else does, and a note written with them carries weight at an appointment. Disability care at home sets out the kinds of support an adult can arrange, and Scope, the disability charity, has advice on cerebral palsy for adults and families.

The move itself is covered in the transition to adult services at 18. This section is about what comes after, for an adult of any age.

An adult who chooses not to have regular reviews should still, NICE says, be told when to contact a professional and how to reach specialist services. The GP is the usual way in. It helps to ask plainly: "Who is the main point of contact for my son's cerebral palsy, and can we be referred to the multidisciplinary team?"

How the person communicatesSection titled How%20the%20person%20communicates

A carer who cannot understand the person cannot support them properly, so communication belongs in any plan. NICE makes two points here. The first is that an adult whose speech is hard for strangers to follow may still prefer speech as their main way of communicating, and that preference should be respected. The second is that training in a communication aid should go to the person's regular communication partners, at home, at work and in care, as well as to the person. A new carer should be shown how the person communicates before anything else.

NICE also points out that some adults with cerebral palsy find it hard, or impossible, to tell people they are in pain, and that the family should be asked how best to recognise it. That knowledge belongs in the care plan, in the family's words. If swallowing is changing, the NHS page on swallowing problems explains the assessment, and a speech and language therapist is the person to see.

An assessment in their own rightSection titled An%20assessment%20in%20their%20own%20right

NICE tells professionals to explain to the person with cerebral palsy, and to their family and carers, their right to a care and support needs assessment under the Care Act 2014. That assessment is the adult's own. It looks at what they need to live the life they want, and a parent who provides care can ask for a separate carer's assessment of their own. You can apply to the council for a needs assessment on gov.uk, and local authority funding explains what follows.

If the council agrees to fund support, the adult can ask for it as a direct payment and choose the person who helps them. What a personal assistant does, and whether to employ one or engage somebody self-employed sets out the two routes and what each one asks of the household.

Choosing the person togetherSection titled Choosing%20the%20person%20together

When the adult, or the family with them, is ready to look for someone regular, you can search for carers near you and compare their rates, read profiles together, and message the people who seem right. The adult should be at the interview and have the final say. Ask what matters to them, such as how the carer would learn their way of communicating.

PrimeCarers is an introductory service, not an agency or a care provider. Every carer is checked before their profile appears: identity, right to work, an enhanced DBS check (or PVG in Scotland, Access NI in Northern Ireland) issued within the last 18 months, and an online interview. Every visit booked through PrimeCarers is insured, by the carer's own policy or by cover PrimeCarers arranges where they do not hold one. We do not check qualifications, training or references. What a carer says about their experience with cerebral palsy, hoists or communication aids is their own account, for you and the adult to ask about and follow up. Questions to ask at interview will help.

Some tasks are healthcare rather than personal care, such as a tube feed or rescue medication for epilepsy. A carer can do these only if a regulated professional has assessed the person, trained that carer and signed them off. Delegated healthcare tasks explains how that works.

The larger decisions, such as where your son or daughter might live, who can make decisions if they cannot, wills and brothers and sisters, are covered in when you can no longer be your son or daughter's carer. The steps below are the ones specific to cerebral palsy, and they can start this year.

1. 1

   Ask for the review NICE describes

   This month

   NICE recommends offering an annual review to adults with complex needs who are cared for by elderly, frail parents, and reassessment by the multidisciplinary team when support from a parent is lost. Ask the GP whether your son or daughter has a review, who leads it, and who the contact is between reviews.
2. 2

   Ask for both assessments

   Free, from the council

   Your son or daughter’s needs assessment, and a carer’s assessment for each parent who provides care. Ask for the council to record how much of the current care you give, so the gap is known before it opens.
3. 3

   Bring in another regular person now

   A few hours a week

   A carer or personal assistant who gets to know your son or daughter while you are still there learns how they communicate, how transfers are done and what a bad day looks like. A regular break can start the same way, and respite for parents of a disabled adult covers the forms it can take.
4. 4

   Write down what only you know

   Over a few weeks

   With your son or daughter, and in their words where possible: how they communicate yes and no, how they show pain, how they like to be positioned in bed and chair, how they eat and drink safely, and the names of every professional involved. NICE asks for how best to identify pain to be in the care plan.

Handing over care you have given for a long time is hard, and so is accepting someone new. Start small, with the same person each time, and let your son or daughter lead the introductions. A second person is not a sign that you have stopped coping. It means your son or daughter has more than one person who knows them well.

PIP depends on the help somebody needs rather than the name of their condition. PIP and care at home explains the scored activities, how to claim and how to challenge a decision. If a parent cares for 35 hours a week or more, they may be able to claim Carer's Allowance when the adult gets the daily living part of PIP, but it can affect other benefits in the household, including some the adult receives, so check with a benefits adviser before claiming.

Where the adult's needs are mainly health needs, NHS Continuing Healthcare may fund the whole package. PrimeCarers does not give financial or legal advice, and for anything involving trusts, wills or benefit interactions a regulated adviser or a solicitor is the right person.