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doctor

This time, I will try to guide you through the care systems in the UK.

These are:-

1.

Adult Social Care - which is available in England for up to six weeks. In Scotland the system is different; adult health and social care services are managed though a single budget and a single management system.

This tends to be the Social Services response to a medical emergency. Often it is put in place following a stay in hospital. It is, however, possible to get care in your home if, say, you have influenza. Contact Social Services to ask.

The maximum response seems to be 1 or 2 carers, up to four times a day for up to six weeks. The service is free to anybody with a proven need, but there are many forms to fill in [and have counter-signed] before you can get the help. And you may find yourself with one carer once or perhaps twice a day within a fortnight!

My 'evening carer' was usually gone by 7 pm, and the 'breakfast carer' arrived randomly and unpredictably between 6.30 am and 10 am - usually somebody different each time. And I do not qualify for free incontinence pads, nor could I get myself to the lavatory or commode at that time. I was usually a physical and emotional wreck by the time help came.

My advice for relatives who are concerned that a loved one will need extra help for a short time after being an in-patient, is to ensure that the system is in place before their relative is discharged from hospital. I have known family members to refuse to accept relatives home before care/equipment is sorted. This might be the only time you ever have the leverage to make things happen!

Hoists to deal with long term disability, commodes, wheelchairs, various pieces of equipment can be installed / delivered - on long-term loan - free to the user, (more on this another time).

Mind you, there may be no money to supply the carer so that the hoist, etc. can be used.*

The answer, you might suppose, would be to give me/ your relative a longterm carer. But unless I return to hospital, and get a sympathetic doctor to insist upon it, I will not qualify for any more Adult Social Care. Ditto your relative. My/ their needs can only be met by a privately-paid-for care or by the CCG.

2.

Continuing Care is the only free care I might qualify to receive. But this comes from a different 'pot' of money; not Social Services, but from the CCG or 'Clinical Care Group' - which used to be called the PCT, the National Health Service's 'Primary Care Trust' - and I don't qualify.
I doubt I ever will.
I know of somebody on a respirator who is deemed to have 'social' rather than 'medical' care needs. She doesn't qualify, either.

My needs ARE complex enough for me to qualify to be assessed for care - and on an annual basis. Last time all four (!) assessors agreed I was highly vulnerable and really needed care/ carers.
They also agreed I was never likely to get it.

To get care you have to score an 'A' on most sections of the preliminary questionnaire; then you need to score highly on the more detailed questionnaire.

As I get more immobile (which is what is happening, as my type of MS leaves me progressively more paralysed) I will, in fact, score fewer, rather than more, 'A's on the preliminary questionnaire. This is because I will be deemed to be LESS at risk of falling as I become less able to move... and yes, this IS the official reason I have been given...

If you have, or you have a relative with, severe and complex needs, to get Continuing Care I suggest you...

A. Start asking for an assessment NOW [it takes ages to set it up - and my meeting was more than 4 months ago, but I have not yet heard their decision]

B. Do not neglect to mention if you have, or your relative has, dementia, and/ or alcohol- or drug-addiction, because these score highly

C. Do not move out of a dwelling you own just because it cannot be accessed any longer (if you sell it or give it away, you will be deemed to have deliberately disposed of an asset. If you rent it out in order to rent another, more disabled-friendly, property you will be deemed to have enough money to buy your own care. If you are lucky your local council will have a scheme where they lend you money for care against a loan on your property - to be repaid on your death. Let's hope you don't have a spouse or children...).

There are, of course, alternatives to State care. There is the 'Home From Hospital' service. Sadly this is entirely a voluntary service, which seems to be mainly run by organisations such as the Red Cross. And the Red Cross is no longer active in my area.

You may be luckier in your part of England. This is how it works in Birmingham:-

The service is available to all Birmingham residents who have been in hospital, with referrals taken from medical professionals, social workers, patients or their families.

The volunteers will:-

  • Fetch shopping and/or prescriptions
  • Provide a food parcel on the day of discharge for patients who have no one to shop for them
  • Visit for a friendly chat
  • Go to the bank or post office
  • Possibly escort you to hospital, doctor, optician, hairdresser
  • Give benefits advice
  • Help you sort out bills and other paperwork
  • Arrange for furniture to be moved in your house where necessary
  • Make arrangements for pets to be rehomed/temporarily cared for
  • And more...

Superb!

4.

Some areas have local charities which provide some of the above. You should ask everyone - your GP, your hospital, your support group [locally and nationally], Social Services, anybody and everybody you know.

A lovely cancer support volunteer at my local hospital told me about a wonderful local support group for those with life-changing medical conditions.

5. Some councils [but not mine] have Meals on Wheels, which can be a valuable asset to those who are less mobile. Ask.

6. Not everyone knows that if you are (or your relative is) in a Residential Home and deemed to need 'Total Care' then from that point onwards the Residential Home is free.
This can even be backdated.

So - ask!

If you don't know if a service exists, describe it and see if anything like it is known. Somebody may know the name of such a service - and then you can ring up everybody and ask for it by name.

Next time I'll answer "Can you get dentists or opticians to make home visits?" and "Where can I get a wheelchair and useful mobility aids?"

Until then, look after yourself...

 

* I was loaned an electric ceiling-rail hoist, and Social Services even installed it in my bedroom, but I was told it could only be used if I had two carers in attendance [for health and safety reasons]. Which was, of course, also the moment they told me they had withdrawn the second carer...

If I could reach the 'sling' - which is the bit you sit in - [but I cannot reach it], put it under myself [which I cannot do], move the hoist along the ceiling rails [I cannot reach the hoist or the electronic controller], attach the sling to the hoist's dangly pieces [I cannot even lower them, never mind attach the sling to them], then I could have the pleasure of moving myself up and down over the bed all day. Sort-of-like a Theme Park!

Unfortunately, the hoist does not move sideways without a carer pulling it. And these days I don't have even one carer. Also, even if I did, I would still have to get onto my wheelchair, somehow remove the sling from underneath me, and magically transfer from the chair to the lavatory. Then reverse the whole process to return to bed.

There is no hoist in my bathroom.

I laugh because I have to...

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