The short answer
- The house has to change before the day they come homeStairs, the bathroom and the route to the toilet at night are where the first weeks go wrong. An occupational therapist says what is needed.
- Three kinds of help arrive, and two of them endNHS therapy at home and free council reablement run alongside anything you pay for. The free help is short, so plan for the week it stops.
- Start heavier than you think, then review itBoth ends of the day, every day, is about 17 hours: £315 to £438 a week on PrimeCarers, fee included. Dropping visits is easier than adding them in a hurry.
- Everyone in the house needs to know FASTA new face droop, arm weakness or trouble speaking means 999, and the NHS says to ring even if the symptoms stop.
Hourly figures are what carers on PrimeCarers charge, £18 to £25 an hour with our fee included; agencies charge £28 to £35 for the same visit. Nothing here is medical advice.
Week one
What the house has to cope with in the first week
Almost everything that goes wrong in the first fortnight is about getting from one room to another. The ward had a hoist, rails and somebody within earshot. A house has none of that until you arrange it.
Before discharge day
0 of 12 ticked
Getting in, and getting about
The bathroom, where most of the trouble is
Meals, drinks and tablets
Paper to come home with
Councils provide equipment and small adaptations, and the NHS says you may get free home adaptations and equipment costing less than £1,000 each. Ask the hospital occupational therapist to refer you before discharge: a rail fitted in week one beats one fitted in week five. The equipment that helps an older person stay safe at home covers what to ask for, and what to arrange before discharge day and how hospital discharge works cover the process itself.
A day at home
The shape of a day when one side does not work
The jobs are the ones everybody does every day. What changes is how long each takes and what it costs in energy, and that decides where the paid hours sit.
- 7.30am
Getting up, which takes longer than anything else
Turning, sitting on the edge of the bed, standing, washing and dressing. The therapists will have shown you an order for it, the weaker arm into the sleeve first. Doing it their way every morning is what turns it into something your relative manages alone.
- 9am
Breakfast and the morning tablets
Sitting upright, small mouthfuls, and the textures the speech and language therapist set. Coughing at meals is reported, not worked around.
- 12.30pm
Lunch, and the exercise sheet done properly once
The therapists set the programme and are not there daily. Somebody doing the exercises between their visits keeps it going.
- 3pm
Out of the front door, even briefly
A trip to the gate, the car or the shop counts. Life narrowing to one room is hard to reverse.
- 6pm
Tea, evening tablets, and the tiredest part of the day
Speech slips when someone is tired, and so does balance. An evening visit covers the hours a family carer has least left.
- 9.30pm
Bed, and the plan for the night
Nightclothes, teeth, the commode within reach, a light that comes on, a phone by the bed.
- 2am
The toilet trip nobody planned for
If it is happening every night, a sleeping night carer for a few weeks is worth pricing.
Read the day as blocks rather than a rota. Two of them are heavy, the morning and the evening, and both turn on getting between bed, chair and toilet when one side does not work. If you are working out the hours, how many visits a week your parent needs builds the week up from tasks.
Who is in the house, and when
NHS therapy, free reablement, and the visits you pay for
Three kinds of help can run at once in the first weeks, and two of them stop. Knowing which is which keeps you from paying for something free, and from being caught out in the week the free help ends.
| Where the help comes from | Weeks 1 to 2 | Weeks 3 to 4 | Weeks 5 to 6 | Weeks 7 to 8 |
|---|---|---|---|---|
| NHS therapy at homeThe early supported discharge team, then the community stroke team. NICE says therapy at home should carry on at the intensity used in hospital. How long each team stays with you is set locally, so ask. | Assessments, goals agreed, the exercise plan written down | The programme, with the goals looked at again | Handover to the community stroke team | Ask what happens when this team discharges you |
| Free council reablementShort-term help from the council to get someone doing things for themselves again. The NHS says it is free for as long as it is needed, and that is usually a maximum of six weeks. | Standing, washing and the stairs, practised with somebody there | More done alone as the help steps back | Ends, with a conversation about what comes next | Finished |
| Paid carer visitsThe part you book and pay for. It covers the hours when nobody else is in the house, and you change it as the weeks go on. | The heaviest fortnight: both ends of the day, sometimes nights | The same shape while the free help steps back | A review before reablement ends, dropping what is no longer needed | The hours reablement was covering have to come from somewhere |
| You and the familyThe hours nobody writes down. Draw them in anyway, because this is the row that decides whether the arrangement lasts. | Nights, medicines, phone calls, washing | The same, and the appointments and the forms | Back to work, if work has been waiting | Whatever the paid hours do not cover |
NHS therapy at home
The early supported discharge team, then the community stroke team. NICE says therapy at home should carry on at the intensity used in hospital. How long each team stays with you is set locally, so ask.
- Weeks 1 to 2Assessments, goals agreed, the exercise plan written down
- Weeks 3 to 4The programme, with the goals looked at again
- Weeks 5 to 6Handover to the community stroke team
- Weeks 7 to 8Ask what happens when this team discharges you
Free council reablement
Short-term help from the council to get someone doing things for themselves again. The NHS says it is free for as long as it is needed, and that is usually a maximum of six weeks.
- Weeks 1 to 2Standing, washing and the stairs, practised with somebody there
- Weeks 3 to 4More done alone as the help steps back
- Weeks 5 to 6Ends, with a conversation about what comes next
- Weeks 7 to 8Finished
Paid carer visits
The part you book and pay for. It covers the hours when nobody else is in the house, and you change it as the weeks go on.
- Weeks 1 to 2The heaviest fortnight: both ends of the day, sometimes nights
- Weeks 3 to 4The same shape while the free help steps back
- Weeks 5 to 6A review before reablement ends, dropping what is no longer needed
- Weeks 7 to 8The hours reablement was covering have to come from somewhere
You and the family
The hours nobody writes down. Draw them in anyway, because this is the row that decides whether the arrangement lasts.
- Weeks 1 to 2Nights, medicines, phone calls, washing
- Weeks 3 to 4The same, and the appointments and the forms
- Weeks 5 to 6Back to work, if work has been waiting
- Weeks 7 to 8Whatever the paid hours do not cover
The two NHS rows are set by your local stroke and reablement teams and vary by area, so treat them as questions to ask rather than dates to rely on. Draw your own version of this grid before discharge day and redraw it at every review.
The first row is NHS rehabilitation. NICE guideline NG236 says early supported discharge should be offered to people after a stroke who can move from a bed to a chair, on their own or with help, where home is safe and secure, and that the therapy should carry on at the intensity used in hospital. It also asks for at least three hours of rehabilitation a day on at least five days a week. Those hours are therapy rather than care.
The second row is reablement, the council's short spell of help to get somebody doing things for themselves again. The NHS says it is free for as long as it is needed, usually for a maximum of six weeks, and that the team agrees with you what happens when it ends. How to ask for reablement.
The third row is the part you arrange. A carer you book covers the hours the NHS is not there: the morning, the evening, the night, the shopping, the lift to the stroke clinic, and the exercises repeated on the days no therapist calls. Carers on PrimeCarers are self-employed and set their own rates, and you choose them yourself. Each has an identity check, a right to work check and an enhanced DBS on the Update Service, and has interviewed with us online. We do not record or check qualifications, training or references, and we do not provide therapists or nurses, so ask a carer about the stroke work they have done. If the stroke has taken your relative's words, tell a new carer how to talk to someone with aphasia before the first visit. How carers are checked.
How much paid help to start with
What a starting week looks like, and what it costs
Nobody can give you the right number of hours from a page. What a page can do is set out four shapes and what each costs, so you walk into the discharge meeting with a figure.
| What it covers | A week | On PrimeCarers | |
|---|---|---|---|
| Mornings only | Getting up, washed, dressed and fed, every day | About 10 hours | £189 to £263 |
| Both ends of the day | The morning, plus an evening call for tea, tablets and bed | About 17 hours | £315 to £438 |
| Both ends, plus three sleeping nights | The same, with a carer in the house on the hardest nights | About 17 hours and 3 nights | £705 to £873 |
| A carer living in | One carer in the house day and night, with a daily break | Seven days | from £1,050 |
Mornings only
- What it covers
- Getting up, washed, dressed and fed, every day
- A week
- About 10 hours
- On PrimeCarers
- £189 to £263
Both ends of the day
- What it covers
- The morning, plus an evening call for tea, tablets and bed
- A week
- About 17 hours
- On PrimeCarers
- £315 to £438
Both ends, plus three sleeping nights
- What it covers
- The same, with a carer in the house on the hardest nights
- A week
- About 17 hours and 3 nights
- On PrimeCarers
- £705 to £873
A carer living in
- What it covers
- One carer in the house day and night, with a daily break
- A week
- Seven days
- On PrimeCarers
- from £1,050
Hourly figures use £18 to £25 an hour and sleeping nights £130 to £145, what carers on PrimeCarers charge with our fee included. An agency charges £28 to £35 an hour for the same visit. The carer sets their own rate, so this is a range rather than a quote.
Booking heavier at the start and reviewing it is the safer way round. A carer who finds there is less to do will say so, and dropping a visit is a conversation. Finding cover at two days' notice after a fall is worse. Past about 35 hours a week, live-in care costs less than visits, and where a stroke has been severe, live-in care after a stroke covers that arrangement. If nights are the problem, read short-term night care after hospital and waking nights and sleeping nights.
A council care needs assessment is free to ask for and does not depend on savings; local authority funding explains what follows. Attendance Allowance cannot be claimed yet, because the rules say a person must have needed help for at least 6 months first. Read how to claim it and put a note in the diary.
Energy and mood
Fatigue and sudden tears, and what helps
Weakness and speech are explained on the ward. Fatigue and sudden crying arrive at home with no warning, and both have a name and something that can be done about them.
Fatigue is not ordinary tiredness
Build the day around one demanding thing
Crying that arrives from nowhere has a name
Low mood is treatable, and worth raising early
NICE also asks teams to consider a standardised fatigue assessment early in rehabilitation and again at the six-month review, so it is reasonable to ask for by name. The Stroke Association is the national charity for stroke survivors and their families, and runs information and support services you can contact. Their pages on fatigue after a stroke and on emotional changes are written for the person and the family together.
Recovery does not run in a straight line. A good week followed by a flat fortnight does not mean something has been lost, which is a reason to keep notes: three weeks of them show a direction memory does not. Mental health in later life covers low mood, and a carer's assessment is your own right.
When to ring, and who to ring
The signs that mean 999, and the ones that mean the GP today
The risk of a second stroke is why the tablets and the blood pressure checks matter so much now. Everybody in the house, including any carer you book, should know who to call.
| What you see | What to do | |
|---|---|---|
| 999, straight away | The face has fallen on one side. An arm cannot be raised or stay up. Speech is slurred, muddled or gone. Also sudden loss of vision, a sudden severe headache, or a bang to the head. | Ring 999 and say you think it is a stroke. The NHS says to ring even if the symptoms have stopped, and about signs of a stroke in the last 24 hours. |
| The same day | Coughing, choking or a wet, gurgly voice at meals. A temperature, a new chesty cough or breathlessness. A fall without a head injury. New confusion. | Ring the GP surgery, or 111 when it is closed. Trouble at mealtimes also goes to the speech and language therapist, because food going the wrong way causes chest infections. |
| This week | Tablets left in the pot. Weight coming off. Refusing to get out of bed. Tears that do not stop. A family carer who has stopped sleeping. | Ring the stroke team or the GP and ask for a review. None of these is a thing to wait out. |
999, straight away
- What you see
- The face has fallen on one side. An arm cannot be raised or stay up. Speech is slurred, muddled or gone. Also sudden loss of vision, a sudden severe headache, or a bang to the head.
- What to do
- Ring 999 and say you think it is a stroke. The NHS says to ring even if the symptoms have stopped, and about signs of a stroke in the last 24 hours.
The same day
- What you see
- Coughing, choking or a wet, gurgly voice at meals. A temperature, a new chesty cough or breathlessness. A fall without a head injury. New confusion.
- What to do
- Ring the GP surgery, or 111 when it is closed. Trouble at mealtimes also goes to the speech and language therapist, because food going the wrong way causes chest infections.
This week
- What you see
- Tablets left in the pot. Weight coming off. Refusing to get out of bed. Tears that do not stop. A family carer who has stopped sleeping.
- What to do
- Ring the stroke team or the GP and ask for a review. None of these is a thing to wait out.
Keeping the blood pressure tablets, the blood thinner and the statin going every day is the steady work of these weeks, and a carer who comes twice a day helps hold it together. The same treatment lowers the risk of further damage to the blood supply in the brain, and vascular dementia and the risk a GP can treat covers what that means over the longer run. Avoiding readmission covers the other reasons people go back in.
Questions
Questions families ask in the first weeks
It depends on what she can no longer do alone, and the discharge team's assessment is the place to start. One shape is a visit at both ends of the day, about 17 hours a week, which is £315 to £438 on PrimeCarers, fee included. Book that, then review it after a fortnight. Working the hours out from tasks.
Some of it. NHS therapy at home from an early supported discharge or community stroke team is free, and the NHS says council reablement is free for as long as it is needed, usually for a maximum of six weeks. Care beyond that is means tested, and a council care needs assessment is free to ask for whatever your relative has in savings. How council funding works.
A carer can repeat the exercises a therapist has set, on the days no therapist calls, but they do not set or change a programme. PrimeCarers does not provide therapists or nurses and does not record or check training, so ask the carer what stroke work they have done, and ask the physiotherapist to show you both the same method.
The Stroke Association describes fatigue after a stroke as different from normal tiredness, because it does not seem to get better with rest. It can follow any stroke, and it can start straight away or appear later. It can improve over time. Tell the GP or the therapist, because medication or an infection can be part of it. NICE asks teams to consider a standardised fatigue assessment early in rehabilitation and again at the six-month review.
Under the client contract, a visit cancelled by the client is payable in full, with the exception of unplanned hospitalisation, illness, or another reason agreed with the carer, so a readmission falls under that exception. Ending an hourly arrangement takes 48 hours' notice either way. PrimeCarers charges nothing to cancel and does not set the terms between you and your carer. Cancellations and late-running visits.