PSP Association
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NHS Continued Care

Really pleased to share our news. Found out yesterday that mum has qualified for NHS continued care funding and they are hoping to discharge her next week. Dad wants mum home I think it has finally dawned on him that we may not have much time left with her as she is in the latter stages of this god awful disease.

mums been in good spirits over the past few days. Her speech is getting worse although she remembers how to say yes and no. What she does do alot is say 'mem mem mem mem mem' its usually when she needs something or is fraustrated.

A weight has been lifted off our shoulders thanks to the NHS. (My mum gave 20yrs to them as a nurse so its nice to know she's getting something back)

11 Replies

great that you have got CHC 4 your mum

she will benefit and so will u

i have applied and am reapplying via the hospice as i was turned down 4 it initially

so the good new s s for you at the moment

lol jill

hugs and xxxx 2 you /your mum /and family



I hope u get it this time x




thankss for that shasha/opope

lol jiil


Congratulations. An excellent result. Here in Turkey we have no possibility of any financial support and I just have to get on with it. I have surprised myself, especially since last July when the incontinence kicked in. And reading posts on here about untrained carers and fights to get NHS funding I have been thinking that maybe we aren't so badly off after all. We do what we want when we want. Go to see consultant neurologist every couple of months for cost of around £10 and even have her mobile number for emergencies. From March - October we have a more or less constant stream of friends, and my daughter, flying in to visit and they all help out in some way as well as having holidays here. Daughter is moving back permanently in September which will be a blessing and entirely her choice. Only regular help is cleaner who comes on Wednesdays and restores order in the house. If you think there is an element of 'methinks she doth protest too much' you could be right. But almost five years into this horrendous condition we are actually not doing too badly at all.

1 like

Hi Pattz, actually, I am green with envy!!! I feel so alone, regarding our "wonderful" NHS, we can never just go and see our consultant. We are meant to see him every 6-9 months, well the 9 months has just past and haven't even got an appointment through yet, so at least another three months, if the letter arrives tomorrow! Did see another consultant last week that is dealing with one side of PSP, haven't seen the same one twice yet!!! How can a total stranger assess how S is doing on this drug they prescribed for him. As I don't know what improvement it's meant to bring, I'm no help. Keep asking what it's meant to do, but obviously its secret, because I'm still no clearer!!!

Still as nobody can actually do anything about this blasted disease, I don't suppose it matters either way! Keep plodding on!

Lots of love



I am not for one minute saying that living abroad as we do would suit everyone, but it certainly works for us. As far as we're concerned the benefits of better climate, which gives us excellent food, outweigh any advantages there may be to NHS being free and Social Services giving support, etc. C has needed me to dress/undress him for past six months or so which is no joke in winter: 1 short-sleeved t-shirt, one long-sleeved; one cardigan/fleece; jogging pants; socks; slippers. Not sure if that would be enough in UK or not. We are already counting down to warm weather when it will be swimming shorts and a t-shirt for 6 months at least. I am very tired, even with good nights' sleep, so don't have the energy to nag him about exercising. However, I know I would hate having string of strange carers coming through the house and hardly ever seeing the doctor. Not to mention jumping through endless hoops to get funding for those carers. We can't control the disease but we can control how we handle it and it does feel like we have that control here. Good luck.


I am delighted for you


So relieved for you. That will remove one area of worry, at least.


Dear Opone, So pleased to hear of your good news but I would just like to offer a note of caution. You will now realise that one has to be almost at death's door before one can get continuing care, this is the usual practice as I suppose they cannot afford to give it, from financial view point, to those who are expected to live for years. My father and mother were both given continuing care and my mother died within thirteen days, so they were lucky with her. She did not have PSP, she had Alzheimers but I am afraid that PSP is a different beast. My father lived on for over six years and it was hell both for him and me. So be prepared and hold a little in reserve as your relative may have a good few years to live through it all yet. Just in case, brace yourself and be prepared to keep strong for a good length of time so that you can support your Mum for as long as she requires.


Sorry Optone, I should have made it clear, they did not know Dad had PSP, they had never heard of it and Dad only diagnosed six months before he died. That is how he managed to get continuing care. A bit of a mistake on their part.


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