CHC

[Courgettegrower]

Just had another go at getting community healthcare funding. I know this is a difficult area when you pay in to the NHS for over 50 years it’s a bit difficult for them to say oh well you’ve got Msa now but that’s not really a health nursing issue you have to pay for your care and if you’re foolish enough to have got a decent pension plan let us remove it from you in big chunks. Okay so we both have pension plans for a rainy day but let’s be honest the cost privately funded care is absolutely ridiculous. End of rant sorry if I’ve bored you

[Yanno]

Hi there. It sounds as if you've had as bad a day as we have. I had a rant at the OT. Prism Medical charged the NHS an exorbitant £1,700 for a shower chair for Jackie which then didn't have a back support of the right type and they say - 'you should have specified that at the time'. Why don't these so called experienced professionals know that MSA is progressive and one doesn't know what we will need tomorrow! Just had a similar argument with the Worcestershire Wheelchair Service who say we should have ordered a carer's control for the wheelchair when it was supplied and it's too late now...why don't they realise we didn't know then the way MSA would progress!As for your funding issue..I don't think it pays to have a well funded pension and savings. Just spend, spend, spend and then the state picks up the care bills! You deserve your rant...we all do...good luck, Ian x

[Helenhooter in reply to Yanno]

Good rant and as I have yet to get a wheelchair and currently I shower sitting on the floor, I will bear your thoughts of what I will need in future in mind. Thanks 😘

[matie1]

We’re with Hampshire Wheelchair Services. I paid to have attendant controls fitted to husband’s power chair. However we had a review of his chair this week and we’re told that if the Clinical Lead decided hubby could no longer steer his chair they would take it back as the chair was for him not for me! My husband is 6’2 and 17 stone and I was told to use a manual chair. Totally with you in this Yanno. It’s incredibly difficult dealing with the unpredictability of this dreadful disease without having to deal with some political decision by someone who had no idea what we are going through.

Just starting the CHC journey but I don’t have much hope. Maybe it should be retitled ‘end of life funding’.

I’m not very good at posting on this site but we’ve had such a difficult week as hubby now can no longer weight bear and has a pressure sore on his buttock that requires daily dressing. Community nurses coming twice a week but I’m the untrained nurse every other day!!!! Rant over but good to get it out!!

[Helenhooter in reply to matie1]

Keep fighting every day 😘

[Courgettegrower]

Thanks for these replies at least I feel we are not the only ones going through this awful journey although I hate the idea of it being a journey! Just to add to our frustration we were told that Ian can no longer be transferred on the Sara steady so he’d have to have a hoist and whilst that was getting sorted out he’d have to spend all day in bed. Took over a week to track down anybody who could authorise a hoist it came on Monday the gantry hoist which was then removed and Monday evening and a smaller hoist on wheels turned up. Still waiting for the OT and the care company to get together to allow the carers to use it! On the plus side we do have a very good Wheelchair Service here with a very nice OT who is coming back to assess the wheelchair that Ian has now and she is very very caring and careful. Good luck to everybody

[Paul_and_Sue_Wood]

Hi All,

I agree with you all because if you are successful and prudent you then get penalised with the state taking a share of your pot away if you need health support. The first time I encountered this was when I helped my Aunt who was just prudent all her life scrimping and saving then when she wanted help they wanted her money. Luckily I asked what the rules were and was able to spend for her so she fell into the benefits help.

With CHC funding it is about medical care which is not the social care, the easy way to think of this is if the sufferer was on there own who would help, carer or nurse? If it has to be a trained nurse then this is the CHC area. But remember the CHC nurse is trying to prove you don't qualify therefore the financial support is social. With us we part qualify but it's a battle every time...

Keep trying and noting both current and future problems and the potential risks.... risks to health are another big area to be stressed...

Good Luck all.

Paul

[TK-67 in reply to Paul_and_Sue_Wood]

Hi Paul - we were told that if the 'nursing' requirements could be delivered by the home then she didn't qualify for funding! It's madness and extremely stressful.

[TK-67]

Good luck. I have to rant too I'm afraid. My mum is in a specialist nursing home. - consultant insisted that this was best for mum. We started the process for Continuing Healthcare before the pandemic, all assessments were stopped, we got an assessment in early Oct, we have a split decision, Council say no (!), Local Authority say absolutely yes. Told in Jan that all staff had been redeployed to the vaccine programme, told this week (after we chased) that all cases are being dealt with in chronological order to get through an enormous backlog. In the meantime we have no option but to self fund - the fees are right at the top end of the scale due to what mum needs. Even tried to get our MP involved...had a meeting but now nothing from her either.

MSA is one battle with the lack of understanding that it doesn't have a 'pathway' like other conditions but the system is another, truly broken. If mum wasn't in this type of home or being looked after at home she would be in & out of hospital...it makes no sense! She also doesn't qualify for a wheelchair despite having limited mobility so has to use a chair that's not fitted for her... we firmly feel punished that mum has a rare, complicated condition.

There are websites that can help with you with the paperwork, which is extensive and contradictory...

caretobedifferent.co.uk/get...

[Crodiet]

Hi allSorry you need to use this site. But it is very helpful in knowing you are not alone.

Unfortunately I will be leaving the site soon as my sister has now died. But my advice is rant away often, holding it in will just cause more problems.

Sue was diagnosed in 2000, so it has been a long time since we went through the assessments, at first she only had an hour a day from a home help type carer but in 2004 had a bad episode and we got involve with a hospice and they took over dealing with the paper work (at the time I was told this tended to get things done faster because they wouldn’t stop bothering social services or continuing care until the issue got resolved!) this meant that Sue went onto continuing care funding from then.

Things have changed greatly since then and cuts have happened all over the place and I have heard a lot of frustration from professionals that they are not allowed to do what they would like because of budget constraints.

We were very lucky with the wheelchair, Sue started from a walker type support but after the 2004 episodes which involved falls and a hospital admission for a head injury due to one of the falls the hospice physiotherapist banded Sue walking and the wheelchair service in our borough were involved. Over the years I forget how many versions of the wheel chair were involved but at least twice the Putney hospital people were involved in making a custom fit chair. However in recent years the service has been cut to the bone and then cut again and waiting times have got ridiculous.

We did pay for a ceiling hoist (money well spent) and altered the house to have a shower room, luckily Sue was financially prudent so we could do what she wanted. My personal opinion is if you can don’t opt to manage the PIP let the health authority I couldn’t have coped with all that responsibility and paperwork and looked after Sue.

Keep bothering people “squeaky wheels get oiled “ definitely works.

Good luck to all of you trying to deal with this. It’s hard but you can get good times too.

Pippa

[Annietutt]

It is daunting to hear what everyone has written about qualifying for support and funding. We, like many others have saved all our lives and now, instead of spending it on enjoyment in retirement our money is all going towards Supporting Tony. We are lucky in that it means we have some control over what we choose to pay for, e.g a body dryer which would not otherwise be provided, BUT it does seem unfair and I quite understand people “ranting” and often rant myself. It also seems to depend on particular local authorities and the understanding of OTs how much support and understanding is available. Our OT is good (helpful and sympathetic) but has not had experience of MSA patients while our neurological physiotherapist has dealt with MSA patients and can offer excellent advice. I guess we will depend on them more and more as things progress- we haven’t seen a neurologist for two years due to the pandemic and Tony would struggle to make the journey to Addenbrooke’s now. At least we are all ranting to people who really understand on this site. The frustrations of constantly battling for our loved ones can be totally exhausting. Keep up the fight everyone.

[Derkie54]

There's a common theme here.

Like a lot of you I worked for nearly 50 years and saved for our planned retirement which hasn't turned out as planned.

I'm the sole carer, we can get some equipment but qualifying for help is another thing.

You do feel as if you're on your own sometimes and with time things seem to get harder.

My biggest concern is where do we go if something happens to me !

I have organised a lasting power of attorney so my children can be responsible for their mom if needed and I suppose they'll just have to spend their inheritance doing it.

Best not to think of the future and enjoy today, tomorrow and if you can....keep smiling

[TK-67 in reply to Derkie54]

Hi - I hope you don't mind - I just wanted to check something on the LPAs - make sure you get both the Health and Financial ones. We only had the financial one initially and it was a rush to sort the health one while mum was still ok to consent. I know it's sometimes hard to talk about but you may want to consider having LPAs for yourself too - just in case. As daughters we've been in the situation of suddenly having both parents poorly - LPAs and a plan would have made that time easier...what should be simple never is once you're in that situation. And we are now spending our inheritance....but at least we had a plan and could put it into action quickly and mum always said that was what the money should be for - however angry I am that we have no help now we need it when they asked for nothing all their lives. Financially there may also be things you might want to consider now, a financial adviser may be able to help. I always think a plan means that the future is a little more organised and you can focus on the present. And talk about it with your children so they know your wishes and what you'd like the plan to be, It's so hard but looking back it was one of the most important conversations I ever had with my dad.

[Derkie54 in reply to TK-67]

Hello TK-67,

I don't mind at all, yes we have health & financial LPA's for both of us.

We have used a financial adviser to make the most of our savings.

Must admit we haven't sat down with our son & daughter yet about our future wishes, you made a good point there and we must do it, thank you.

I don't expect any help will be available (especially now with the pandemic debts) I'm afraid it is what it is.

I'm sorry to hear you have both parents poorly, it must be hard.

I had cancer some years ago, I'm ok for now and hoping it will stay that way while I'm looking after my wife, otherwise my children will also have both parents to look after.

All the best to you and your family.

Regards

Derek

[TK-67 in reply to Derkie54]

That's good news and a good plan. Unfortunately we lost dad in 2012, brain tumour at 67 at the same time as mum's initial PD diagnosis. So seems doubly cruel that mum has ended up with MSA. Make sure you look after you too, another good reason for that conversation with your son and daughter. It's ok to ask them for help now too.

[Diane831]

It really does seem at times as if being prudent in life doesn’t pay off if you become unwell and need to pay for care, however I will always be grateful for having had the financial security of making choices for Geoff’s care that suited us and made life OK. Our choice to put in a lift, our choice of wet room finishes, our choice of hoist that would go into the car to take on holidays etc. I feel for people who are at the mercy totally of the state system and in inappropriate housing etc. Being given only the provision that the local authority thinks is suitable for generically disabled people. Getting CHC is ridiculously hard and proving that someone’s care needs are of nursing standard if they are done in the home is almost impossible, and the fact that help is so arbitrary between what needs nurse input and what is social is really unfair. But I am still grateful to have been able to spend the kids inheritance making Geoff’s last years of life manageable and relatively comfortable.

[Helenhooter]

Keep trucking xxx

[Hidden]

Nope. Not boring at all. You rant and channel that rant into understanding NHS Continuing Health Care. This can be provided at home or in a Nursing Home. We went through this process and we left no stone unturned. Do not give up Courgettegrower. If for example a Longterm catheter is needed, then so will a bladder wash. It may also mean that there is a risk of infection too, which will require specialist nursing care to recognise this. Social Services cannot do this for example. They have a legal limit on what they can provide. If you have difficulty swallowing then this requires skilled support and not just an 'eat up' and leave approach. For skin integrity then regular sips of water is needed. To avoid pressure sores, then regular turning is needed and so the list goes on. Understand the symptoms that you/your loved one have and then look at what nursing care is needed. This process is not for the faint hearted but thousands of people do not get the NHS Continuing Health Care that they are entitled too. There is a reason for this and you just need to deep dive into the research... Good luck.

[Hidden]

Of course, there is also the Appeal Process..

[Courgettegrower]

Thanks for all the support. So much effort goes in to caring, keeping the house in tact, washing, crying, gardening (actually a relaxation but time consuming), MOTs and car tax, finance issues, equipment all round the house, carers in and out all day, social workers, district nurses, I’m pretty tired of it all. Jolly hard to keep fighting.

[Hidden in reply to Courgettegrower]

I empathise with you. I really do. My dad didn’t want the fight either so he swapped it for: ‘Everyone back off and let me do it my way!’ For him it worked. He (gladly) let go of things like tidy house etc and relaxed with what he could do. He enjoyed visits and told me that there weren’t enough hours in his day. It would take him ages to do tasks and it mattered not a jot to him. As his daughter I adapted around him. He lived on his own. He is now being cared for in hospital and soon to be nursing home. He accepts his new living arrangement and understands that it can’t be any other way. However. He enjoys new faces, more visits, good food and plenty of banter with staff even though his speech is slow and slurred. He should be in a moist diet etc but he won’t have it. Loves his food to much to watch it get mashed up the way he hates it. We give him something to look forward to every day and we talk/cry a lot and that is okay. He’s even going to let me give him a haircut (I’m not a hairdresser!). If there’s no fight left in you then don’t fight. But don’t give up either. Maybe change the way you look at things and think about what you can do and what gives you pleasure. Whatever it is don’t conform live your life. Not just what the ‘system’ dictates. I accept that I may sound rebellious but I’ve had such a sobering experience with MSA that it’s actually strengthened my resolve to be liberated from the limitations of systems and processes. Sending best wishes.