Care for a younger stroke survivor: work, money and family

The Stroke Association's page on young stroke survivors gives that figure, and explains that a stroke can happen to anyone at any age. The differences at this age tend to sit in four places.

The first is a job. There is an employer to tell, a sick pay scheme to understand, and a decision about when and how to go back, which an older person who has retired does not face. The second is money that is still committed: a mortgage or rent, children's costs and loans that were taken out on the basis of two incomes. The third is people at home who depend on the person who has had the stroke, whether that is a partner, teenagers, or elderly parents they were helping. The fourth is services built round older people. A day centre or a lunch club can be kind and well run and still be the wrong place for somebody of 52 who wants to get back to the gym and the office.

The NHS rehabilitation itself does not change with age, and this page does not repeat it. The first weeks home after a stroke covers discharge and the early fortnight, and rehab at home after a stroke covers the therapists and what happens when their visits stop. If speech has been affected, aphasia and communication after a stroke explains how to help without taking over the conversation, and if swallowing has been affected, dysphagia diets after a stroke explains the food and drink levels the therapist sets.

1. 1

   Tell the employer, and keep in touch

   First weeks

   The Stroke Association suggests contacting the employer yourself if you can, saying you have had a stroke and are in rehabilitation, and agreeing when you will be in touch again. Ask for a copy of the policy on returning after sick leave.
2. 2

   Get a fit note once you have been off more than seven days

   After a week

   GOV.UK says you must give your employer a fit note if you are off for more than 7 days in a row. Doctors, nurses, occupational therapists, pharmacists and physiotherapists can issue one.
3. 3

   Ask for "may be fit for work" when you are nearly ready

   When recovery allows

   The fit note has boxes for a phased return, altered hours, amended duties and workplace adaptations. They are advice for you and the employer to discuss, not orders, and you can suggest other options.
4. 4

   Agree reasonable adjustments

   Before the first day back

   GOV.UK lists a phased return with flexible or part-time hours, changes to equipment and working somewhere else in the building among the adjustments an employer can make. Occupational health can help set them out.
5. 5

   Apply to Access to Work

   Alongside

   A government scheme that helps people with a health condition or disability stay in work. GOV.UK says a grant does not affect other benefits and does not have to be paid back.

The legal protection comes from the Equality Act 2010. GOV.UK says you are disabled under the Act if a physical or mental impairment has a substantial and long-term effect on normal daily activities, where long-term means 12 months or more. A stroke is not on the short list of conditions that count automatically from diagnosis, so whether the Act applies depends on the effects and how long they last or are likely to last. Where it does apply, employers must make reasonable adjustments so that a disabled worker is not put at a substantial disadvantage. Access to Work is applied for on GOV.UK, what the grant pays for at work, and what it does not explains where it stops and help at home begins, and the fit note guidance for patients and employees explains each box on the form.

The Stroke Association's page on work after a stroke covers planning a return, rights at work and changing career. If a dispute starts, or an employer talks about ending the job, speak to a union representative, Citizens Advice or an employment solicitor before you sign anything, because PrimeCarers cannot give legal advice.

If you are the partner and you work too, you have rights of your own. GOV.UK says employees can take up to a week of unpaid carer's leave every 12 months to give or arrange care for somebody who depends on them, and balancing work with caring sets out the rest.

PIP is the benefit to claim at this age, not Attendance Allowance, because GOV.UK says you must have reached State Pension age to get Attendance Allowance. PIP is scored on how the stroke affects everyday life rather than on the diagnosis, which matters when the effects are fatigue, memory or planning rather than a weak arm. PIP and care at home goes through the questions and what to do if the decision is wrong, and the GOV.UK PIP eligibility rules set out the 12-month test. An award of the daily living part can open the door to Carer's Allowance for the partner, provided their earnings are under the limit.

The sick pay rules are on GOV.UK's Statutory Sick Pay pages, New Style ESA is on the Employment and Support Allowance pages, and Universal Credit and a health condition explains the extra amount. If the mortgage is at risk, ring the lender before a payment is missed and ask what options it has, and ask what each one adds to the loan before you agree to it. Insurance policies taken out with a mortgage or through an employer are easy to forget, so look for them in the paperwork and ask HR.

A teenager can take on caring a little at a time without anybody deciding they should. The help a young carer can get, at school and from the council is set out in our guide, and Carers Trust has information for young carers about the help available to them.

For the partner, the change can be the hardest part: the person you married may tire in an afternoon, lose words, or, with the emotional changes a stroke can bring, react differently from before. Caring for a husband, wife or partner is about what that does to a marriage, and what is a carer's assessment? explains how to ask for yours. The Stroke Association's pages on emotional and behavioural changes and post-stroke fatigue include advice for family members. The NHS page on recovering from a stroke describes the home recovery plan, and rehab at home after a stroke covers the fatigue and mood checks at the six-month review.

Read the grid by colour rather than by the words in each box. The partner covers the ends of the day, the person who has had the stroke is back at work for two short days, and paid help fills the gaps where the partner is at work and the day would otherwise be empty or out of reach. Rest is written in, because fatigue decides how much a day can hold and a week that ignores it tends not to last.

Choosing the kind of helpSection titled Choosing%20the%20kind%20of%20help

There are three ways to pay for this kind of help, and they suit different families.

The first is to book a self-employed carer yourselves. Carers on PrimeCarers charge £18 to £25 an hour with our fee included, and those who offer company and outings charge £15 to £20. An agency charges £28 to £35 an hour. For a younger person, what a carer can do matters more than the label on the visit: whether they drive, whether they will go to the gym or the match, and whether they can support somebody without doing everything for them. Can carers take you out? covers what an outing involves. When you know which slots you want covered, search for carers near you and compare their rates, read their profiles, and talk to two or three before deciding.

The second is a council personal budget. If the council assesses the person as needing care and support, you can ask for the money as a direct payment and choose the help yourselves. GOV.UK says direct payments let you buy the services you need instead of getting them from the council. Ask for the care needs assessment in the same month as the PIP claim, because both take time.

The third is to employ a personal assistant with the direct payment, somebody who works to the person's own plan, whether that is work, the allotment or the children's football. That makes you an employer, with the duties that come with it, and personal assistants and direct payments sets out what is involved. If needs are higher, live-in care after a stroke is the other route.

Before booking regular slots, know the terms. A visit you cancel is payable in full unless the reason is unplanned hospitalisation, illness, or another reason the carer agrees to, and therapy appointments move, so agree in advance what happens when one does. Notice is 48 hours for hourly care, and bank holidays are charged at one and a half times the carer's rate. Mileage and travel time are chargeable only if agreed in advance in writing.

Support from people who have been thereSection titled Support%20from%20people%20who%20have%20been%20there

The Stroke Association runs a Stroke Support Helpline for survivors, family and friends, and a directory of stroke support groups, including some for younger and working-age adults. Different Strokes is a charity for younger stroke survivors and their families, built on peer support. Meeting somebody of the same age who went back to work, or did not, can help more than any leaflet.