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Question for the experts here please

(50 Posts)
claw2 Tue 12-Aug-14 09:21:06

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?

autumnsmum Tue 12-Aug-14 10:02:38

So sorry to hear this claw , would it be possible to apply for adult dla under the special rules and buy a chair with that? I have to say the way your mother and yourself are being treated is shameful

claw2 Tue 12-Aug-14 10:07:44

Thanks Autumn, I don't know about DLA. My mum gets attendance allowance of £80 a week, so not sure if she is entitled to DLA, I will look into it.

Was hoping there was some legislation with regards to either health or social services having to provide.

claw2 Tue 12-Aug-14 10:14:36

Quick google tells me DLA special rules is only for people under 65. Attendance allowance is for people over 65. My mum already gets attendance allowance of £80 a week.

Attendance allowance isn't enough to cover hire and her savings have gone paying for hire. We hired, as previous OT (from hospice) told us she would be entitled to chair and wheelchair.

autumnsmum Tue 12-Aug-14 10:14:50

Again forgive me if you've tried this or it's not relevant would a charity be able to help? It's utterly disgraceful that you are being expected to chase this whilst being a dual carer

claw2 Tue 12-Aug-14 10:29:28

All suggestions are more than welcome Autumn. I haven't tried charities, will have a look, thanks.

autumnsmum Tue 12-Aug-14 11:02:29

I have heard you can sometimes get a quicker response from local charities

KeepOnKeepingOn1 Tue 12-Aug-14 11:10:53

Claw - have you heard of NHS continuing healthcare? Sorry can't link on phone.

claw2 Tue 12-Aug-14 11:40:01

Keep, my mum already has continuing health care ie carers who come in twice a day to wash her etc. District nurse and Macmillan nurse etc.

The health care side of things is ok. Its the need for equipment, health are saying they don't supply, social services are saying they don't either!

Been doing a bit of googling and apparently my mum is entitled to a 'health and social care' assessment and I am entitled to a 'carers assessment'. These assessments should be carried by social services, usually by an OT.

Now an OT turned up yesterday to show me how to use the hoist as my mum cannot even stand (yes, after 10 weeks!).

I asked him about chair and wheelchair and he told me it wasn't even his job to show me how to use the hoist and he was doing me a 'favour'. When I asked him about the chair and wheelchair, he told me I wouldn't get these as funding is not supplied to terminally ill people 'who don't have long left'.

I have just emailed him telling him criteria is NOT prognosis based, but needs based and asked for assessments of needs.

Its not any different for terminal ill or disability, as far as I can make out. I will be able to kick arse, with some experience under my belt smile

I stupidly thought that terminally ill people, with 'not long left' would be treated more fairly given the circumstance. Arseholes!

PolterGoose Tue 12-Aug-14 11:52:07

claw I don't have any advice, just want to send honks and flowers

claw2 Tue 12-Aug-14 12:21:39

Thanks Polter, its appreciated x

zzzzz Tue 12-Aug-14 12:44:49

Claw2 phone Macmillan and chat to them. Dad died at home and had first props for his chair, then a special chair that reclined. And stood him up, and a hospital bed. Our nurse was fabulous and like a Rottweiler for her patients. He went down hill very fast and yet got services. Ignore OT and go higher. Phone your local priest if you are religious they rather naturally have done it all before with many families. Your local hospice might help/have outreach. Honk honk honk

Please pm me if it would help.

claw2 Tue 12-Aug-14 13:27:34

Thanks zzzz no one seems to know what the hell they are doing here, including Macmillan nurse. I am faced with choruses of 'oooh you will never get that' based on nothingness!

If I sit her in a normal chair or wheelchair, she folds in half and falls over to one side, as she cannot support herself at all. Its extremely painful for her.

My thinking was she either meets the criteria for a chair and wheelchair or she doesn't. Apparently she DOES meet the criteria for a normal chair and a normal wheelchair. But cannot have a reclining chair or wheelchair that actually meets her needs so she can use them!

Their solution is for her to stay in bed, which is what she had to do before we hired. It triggered psychosis and her trying to 'escape' and she managed to climb the cot sides and fell on the floor.

So when we cannot afford to hire anymore, she will have to stay in bed, under constant supervision and quite possibly psychotic again. Which will then make it impossible for me to also care my son!

Anyhow I have emailed social services OT asking for assessments of needs. If he does not respond, I will go higher.

KeepOnKeepingOn1 Tue 12-Aug-14 14:32:39

Mum only got the services and equipment at the end. Talk to the DN and Macmillan nurse. She is entitled to all the equipment she would have in hospital. Mums DN could get equipment delivered the same day.

I thought you might already have carer's allowance but if not you should claim it. Also a DLA reassessment for your mum.

KeepOnKeepingOn1 Tue 12-Aug-14 14:41:54

Claw - sorry not sure - does your mum get continuing care or NHS Continuing Care? - ie a Checklist completed followed by a Decision Making Tool being completed within 28 days? If she qualifies based on need the NHS is responsible for funding all health and social care.

zzzzz Tue 12-Aug-14 15:54:00

What about consultant or even GP? They surely could advocate for you?

OneInEight Tue 12-Aug-14 16:18:51

Have you tried your local hospice. I know my father got loads of stuff via them including a hospital bed - he was in the hospice for a few weeks first before they decided my mother would be able to cope at home.

claw2 Tue 12-Aug-14 16:50:59

Keep - according to the letter 'meets the criteria for NHS continuing healthcare under the national framework for NHS continuing healthcare and NHS funded Care November 2012 (revised) this means that care will be funded by XXXX clinical commissioning group' Im just reading it now. Someone must be responsible for providing these things, just health and social keep sending me bouncing between the two.

ZZZZ consultant at hospice and GP just say its not their dept and to speak to continuing health team or social services.

Oneineight yes the Macmillan nurse comes from the local hospice and ive had no joy there.

claw2 Tue 12-Aug-14 17:04:58

Just looking at the framework it states

"A joint package of care could include NHS-funded nursing care and other NHS services that are beyond the powers of a LA to meet. The joint package could also involve the CCG and the LA both contributing to the cost of the care package, or the CCG commissioning part of the package"

So CCG seem to be saying that equipment is beyond thier powers to meet ie they CAN provide a normal chair and normal chair, but not reclining chair and wheelchair, as reclining is 'specialist'.

OT from hospice made a referral to OT at social services. OT at social services is saying its not social services responsibility to provide this equipment!

At the moment the only package my mum has involves healthcare.

claw2 Tue 12-Aug-14 17:50:05

I am now unsure whether i should be pursuing the NHS or social care!

AgnesDiPesto Tue 12-Aug-14 20:31:02

I was gong to suggest hospice too
GP and district nurses were brilliant with DH Dad
You can always try the old chestnut of writing back to OT asking to confirm their naff advice in writing and copying in MP
And bung in formal complaints all round.

claw2 Tue 12-Aug-14 21:18:02

I am just going round in circles with health and social both claiming the other is responsible.

I have put his advice in writing to him and asked for an assessment of need. I will give him a couple of days, then go higher if need be.

Its a disgrace, that they expect my mum to spend her remaining weeks/months refined to bed, which literally drives her insane. Mentally she is still very able and still very active and awake.

Fingers crossed, he stops wasting time and replies.

MeirAiaNeoAlibi Tue 12-Aug-14 23:02:45

NHS wheelchair services shouldn't discriminate against the terminally ill. They usually give the minimum cost chair which meets the patient's needs. I'd hazard a guess that any 'no terminal patients' rule for a specialist wheelchair would be illegal as well as inhumane.

Recliner chair might be trickier. If the NHS just doesn't provide them locally, for anyone, that would be harder to challenge. And I've never heard of social services funding anything that could be construed as furniture.

If your mum went into a nursing home, that would cost the NHS/LA £600-800 per week. Hospice or hospital could be twice that. And if she gets psychosis and falls from being confined to bed at home, there should be a written risk assessment that someone takes responsibility for.

Disabled facilities grants (ramps, shower rooms etc) are theoretically available to anyone who qualifies. But they're probably useless to you cos of long waiting lists and requirement for payback if you stop using it within 5 years.

MeirAiaNeoAlibi Tue 12-Aug-14 23:10:31

Trapping a terminally ill person behind bed rails, when they want to get up, knowing the rails have caused falls and psychosis, probably constitutes abuse or neglect. Perhaps even when there's no other obvious option.

I wonder what the outcome would be if you were to deliberately report yourself to safeguarding for following written professional advice... (cc-ing MP head of CCG, head of adult social services, hospice & of course your local councillor)

Nerf Tue 12-Aug-14 23:21:12

Not sure this helps but to Answer your first post cancer is covered by the equality act.

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