Question for the experts here please

[claw2]

Hi, I haven't been on for a while, been busy caring for my terminally ill mum, as well as my son.

Anyhow although this isn't specifically a SEN question, I was wondering whether a terminally ill person is a) classed as disabled and b) covered by disability law.

My mum has been at home with me for 10 weeks now, she is terminally ill, unable to walk, but mentally still very active. Due to the cancer being in her spine, she is unable to sit upright in a normal chair as her spine is curved and its too painful.

So we are having to hire a reclining chair, just so she doesn't have to spend all day in bed. We are also hiring a high dependency wheelchair, so we can leave the house and she can have some quality of life.

However, its extremely expensive and money is running out.

Social services and health service are saying they do not have to provide a chair or a wheelchair.

Does anyone have any advice or experience please?

Thanks zzz, I have been asking hospice, macmillan, gp, district nurse, continuing care manager, social services OT for the last 10 weeks. No one does anything, other than tell me its not their dept or to ask someone else, with everyone blaming each other.

I have had a reply from OT this morning, he has ignored my questions, however he has stated that 'he might have a reclining chair in stock, however if not in stock, its not his responsibility to supply one'. How on earth can he have a reclining chair in stock, if like he said social services do not supply them!!

I will take the reclining chair without question, with both hands, just what a performance. Why cant responsibility and processes be made clear from the start.

hi claw, sorry your struggling for equipment, have you phoned pals? that would be my next avenue to go down in your position, ss, health etc all come under one umbrella now, so pals can chase it up for you.
could also phone McMillan advice line and talk to someone there, they will tell you who is responsible for providing equipment.

Still not heard from him, how long does it take to check to see IF you have a chair in stock or not! Chair hire runs out on Friday and it will have to renewed for another month. IF they are not going to supply a chair, it would be cheaper for us to buy one, we would have paid £1,400, the cost of the chair isn't much more.

District nurse said yesterday that she would chase him up, now he has said he might have one. As you thought previously it should be the responsibility of continuing care package (although she did say, she was not sure of this!)

Thanks for the info, I will make those my next steps if I don't get any joy.

Thanks guys

I have heard from district nurse, she has told me neither continuing care or social services will provide a chair or a wheelchair.

Carers have requesting hoist training from social services OT, BUT he has refused. So I am expected to do all the hoisting for the carers (might as well just get on and wash her myself too).

So I am on ebay trying to find a reclining chair (preferable one on castors that can fit through a door way) and a tilt wheelchair to buy.

I could continue chasing, but time is of the essence, think my time and energy is better spent.

Total disgrace, that both continuing care and social services are happy to leave a terminally ill lady stuck in bed 24/7/

Thanks everyone for your suggestions and helping me try.

Claw. Experts & guidelines

Before you give up, do one last email. To the local manager directly- it might be that there's something suitable currently, 'out there'.

Sometimes no-longer-in-use equipment takes much too long to get back to base... If second hand equipment exists locally & they know someone's waiting, they might chase it.

Maybe drive a hard bargain with your chair hire people. You can bet soc serv etc do. Collecting it & refurbishing it ready to sit in a warehouse prior to delivery for the next customer... that's where they lose money. Might be worth their while doing a deal with you.

Thanks Meir, when district nurse phoned she said that the manager of continuing care services had told her 'getting specialist equipment takes too long and my mum doesn't have long left'

Unless they have a prognosis that we haven't been told about, my mum hasn't been given a 'time' limit. Just that she is terminally ill and there is nothing more that can be done and its a case of just making her as pain free and comfortable as possible. (We were told this in February and her cancer is the slow spreading kind. She lost her mobility 17 weeks ago and came to live with me 10 weeks)

'Comfortable' is a bloody joke, if their idea of comfortable is being left in a bed 24/7 while she is still very active mentally and is capable of joining in family life, eating meals with us etc and leaving the house, going shopping etc and enjoying what time she has left.

I hate that they have written her off already, when she is still so capable.

I like your idea of approaching the hire company, will give that a try tomorrow. Thanks

According to Luke Clements book on Community Care and The Law, it is part of the general duties of the NHS to provide wheelchairs through The Wheelchair Service. He talks about National Guidance on Wheelchairs. I would ask the GP to refer your mother to The Wheelchair Service ASAP.

Dd1 was referred by the physio at her college. we got a letter from our service within a couple of weeks. If no joy fairly quickly, I'd start the NHS complaints procedure against your CCG and ask for it to be fast tracked in view of your mother's terminal illness.

No harm at the same time in doing the same with SS - they can provide anything. Point out this is in breach of your mother's rights under The Human Rights Act Articles 2 and 8. Tell your Council also you want it fast tracked as you will be complaining to The Local Ombudsman within 10 working days as this is an emergency. If they refuse to fast track it, that in itself is disability discrimination and you will take that up with the LGO too.

Look up on Google National Guidelines on Wheelchairs. On my first page, a page comes up of guidance on specialist wheelchairs and seating. Postural management is talked about - in a timely manner. see also other NHS sites on this.

Thanks everyone for all the info and advice. I contacted hospice, they do not provide any equipment.

I did send SS OT another email, asking that he put his advice in writing and reply to my previous email, as he failed to answer any of my questions.

He then phoned me, told me they had several chairs in stock, but none of which met my mum's requirements. But that he had spoken to wheelchair services and they had agreed to assess. He also told me continuing care were fully responsible for providing anything my mum needed.

I asked him to put that in writing via email and to copy in the person responsible at continuing care.

I also sat down and waded through all continuing care paperwork. The reclining chair was part of the equipment that should have been provided prior to my mums discharge from the hospice and it sets out the reasons why.

Also reading through the paperwork and assessment that was done in June, this info is out of date or inaccurate. I can see why they keep saying 'she hasn't got long left'

For example it says that my mum can weight bear and stand for short periods, supported by 2. She was only able to do that when she was admitted to the hospice, not when she left.

Also that my mum was sleeping most of the time, not eating and had to be fed, drinking from a baby beaker, if at all. Doubly incontinent and was psychotic and aggressive (this was true, as she was refined to bed 24/7!) This was due to mentally, not physically, she was depressed.

Since coming to live with me (and her meds being changed and being allowed out of bed!), she is a different person, she is eating and drinking well, as you or I would, from a cup/glass and using a knife and fork. She is very alert and awake all day, articulate, she is using the commode and wears knickers during the day, just a pad of a night. She is rarely psychotic (unless refined to bed!), we go out shopping and to eat etc! She is back to 'normal'.

Obviously she is terminal and her time limited, but she has improved so much since leaving the hospice.

Yes, it's true continuing healthcare are responsible for providing everything your mum needs. However, the LA and the NHS are supposed to work together locally - not try to pass the buck to each other, leaving you as the meat in the sandwich!

Yes, it's true continuing healthcare are responsible for providing everything your mum needs. However, the LA and the NHS are supposed to work together locally - not try to pass the buck to each other, leaving you as the meat in the sandwich!

I stupidly thought that services for terminally ill people would be better than usual disability services. Seems they make it difficult on purpose, in the hope you will just go away, much like trying to get a statement or services for my son!

I also cannot help but to think of other disabled/ill/elderly people who do not have family or anyone capable of advocating for them (particularly as carers keep telling me how lucky my mum is and others rely solely on them) Its a disgrace.

Don't tell them that she has improved or they might stop continuing care

Download the checklist and DST. Needs are scored in different categories but not all categories have a severe score (which is why the majority of those with dementia don't qualify). Complexity and unpredictability are key so severe mobility plus 'challenging behaviour', double incontinence, feeding and drinking difficulties is more likely to be funded than mobility alone as need rather than diagnosis underpins the decision.

The decision is meant to be reviewed if the person was scored in an acute setting where needs may appear greater and is supposed to be regularly reviewed in any case as needs change.

You know the score - worst day possible not what they can do or how they have improved.

Elderly care is far worse than SEN . Evidence of failure is needed to be funded but by then the belief seems to be they are old/sick and are going to die anyway so it is not really worth providing any funded services. There is no happy ending eventually as delay can't be caught up once tribunal orders the correct intervention. There is no tribunal and there is no time to wait for a fair hearing. Imagine if there were nothing beyond the LA beyond an appeal to the same LA to reconsider. Local unlawful practices bear no relation to the framework and the usual way of doing things (eg taking best interest decisions without testing mental capacity) are treated as if they are set in stone.

ime I was totally fobbed off and spent hours in meetings right up to the point where the DN/GP put mum on a syringe driver. Then all the services came out. She never regained consciousness and died three days later.

Sorry you are having to deal with this

Oh no, its not just the elderly - the disabled are treated the same. Until April last year, people could get legal aid over continuing health care, but the government got rid of that, I think.

People can get legal aid over social services decisions - so long as they are on benefits like ESA, and have less than £8,000 in money (such as disabled young people, living with their parents). A solicitor would look towards initiating judicial review, rather than going through the LA's complaints procedures. Its far quicker!p

Relatives/carers can apply for deputyship for health and welfare (where lasting power of attorney is not applicable because the person never has had mental capacity, or did not have the foresight to apply for LPA when they did have capacity), which gives them the right to make best interests decisions for their loved one, where medical decisions, etc are being made regularly. Where for instance, doctors were pushing for an elderly person, with no mental capacity to go into a residential care home (to get them out of their acute ward and make social services fund their care), and the elderly person and their family don't agree with the decision, it has to go to the Court of Protection - because its a deprivation of liberty. It is all the NHS and Social Services trying to push the responsibility for the disabled or elderly person onto another agency, because they don't want to fund it!

Family can also apply for deputyship for financial affairs, although it is not worth it for the parents of disabled young people, where they are already the appointee and the young person only gets benefits.

Thanks Keep, that was my thinking too, but there is no hiding her improvement in certain areas.

She is literally a different person to what she was in the hospice. I put this down to the hospice sedating her all the time ie confusion started, mum would get out of bed in a confused state, they would sedate. Hence she was unable to use the toilet, drink or eat (on a liquid diet and drinking sips from a baby beaker) she was out of it, drugged up.

When she went into the hospice with an infection requiring iv antibiotics she could walk and was totally independent, getting on buses and going shopping etc!. After about 7 weeks of being sedated and bedridden (in a bid to control the confusion) she has lost her mobility and ability to sit upright. Obviously her cancer isn't getting any better, only worse. She was given 2 years, 2 years ago, so we are not talking years left.

Everyone (including us) thought she would die in the hospice, as she had deteriorated so rapidly and severely.

Now she is home with me and getting 1;1 care and not being sedated, she is back to her normal self again, just without the mobility she had before. No one can quite believe the improvement! As I said she is awake all day, eating what we eat, drinking, using the commode etc. Due to her limited mobility she cannot carry out any daily living activities for herself. She does still get confused, but rather than sedate, I show her the story (with pictures) of what has been happening since the hospice to remind her and she snaps out of it.

Seems I cant win, if she is too well, I might lose CC or if she is too ill I cant have chair and wheelchair to make the most of while she is still well enough!!

Thanks Temp, to be honest I don't have the energy to fight this I will get a chair and wheelchair from somewhere, the easiest way I can. Second hand ones are looking like far less hassle.

Thanks guys

NHS fights (for wheelchair) are nothing like Tribunal fights, unless you start doing the formal complaint, ombudsman, discrimination stuff.

Sometimes a drip-drip process of gradually nagging people to do their job will wear the right person down. So while you're sourcing the second hand chair, keep up the brief phone calls and emails to wheelchair services & OT, on the off-chance, and you might get somewhere.

Hospice staff should back you up on not losing the continuing care. Tbh, her better function with your particular expertise in caring is an argument FOR cc, rather than against. The prognosis thing should be ok, if months rather than years are the prediction. Without you, she'd be costing the NHS an arm and a leg in a dementia-specialist NH (think indie SS).

And once you find a second hand chair, ask them to pay for it. Unlikely, I agree, but, like in SEN, if you don't ask, you don't get

And find some excuse to get the cancer care nurse and GP to do home visits, if you can. Feisty patients overcoming doom&gloom predictions (albeit temporarily) tends to appeal to health professionals, and seeing is believing

Just thinking. Is she tiny & skinny? If so, they might not have thought to factor it in, but perhaps have some paediatric equipment that a (say) 13y old with complex needs has grown out of.

They wouldn't normally give paediatric equipment out to adults as that'd take it away from a kid, so stuff sits in storage. Given your mums poor health, that might be less of an issue