Sister in the UK with CBD

[Scionaw65]

I live in Southern California and my sister lives in Manchester England. I just read Skye04's post and it could be talking about my sister. Identical symptoms. My sister is 67 and has been suffering from CBD we believe for many years. It started with her left arm and initially we thought it was carpal tunnel syndrome. We battled for a few years and finally got the diagnosis of CBD. It has progressed so now her whole arm doesn't work and her hand is also curled up similar to Skye04's sister. Her legs now seem to be going. This last year I have noticed the disease is progressing and her main issue at the moment is her balance. She keeps falling. Recently once or twice a week. While I was there last year she fell and broke her arm. In a call today I found out she blacked out and now has 10 stitches in her head. She has a good husband but he is 79 and I am now worried about his health and how long he can take care of her. I haven't lived in England for 40 years and I certainly do not want to bash the NHS but honestly it has been a nightmare. My sister is not receiving any help at all. The whole process has been so frustrating. I could tell you horror story after horror story. Every time we try we get shut down. Very difficult for me as I don't know the system but want to help but live so far away. When she broke her arm we told all the staff at the hospital time after time what she had, what she couldn't do and it was like no one heard us. Every avenue we try has been more difficult than you can imagine. She is getting worse and now with Coronavirus all calls are met with no one is coming out now. Over here in the states my sister would be assigned to a case manager and they would coordinate all of her care with the various resources. I am looking for advice, how to get my sister and her husband some help. Any contact info how to move through the NHS system would be much appreciated. She has a primary GP of course but not much help at all. I had to fight with them to just get her an appointment with a neurologist. The obnoxious yank and all that I totally understand how difficult Coronavirus is but here caregivers are still going out to take care of their patients, just using extreme caution. My sister needs help, she can't shower, wash her hair. Her husband does a good job but it is getting harder and harder for him to do all this. My sister tells me that she cannot get any help as she has to be assessed and that is not happening and could take months or even years. Desperation has set in. I would appreciate any guidance from you Brits navigating the NHS system.

[Hidden]

This is a year old post by Kevin_1 about continuing health care and the NHS. It might help. Coronavirus has screwed up everything.

healthunlocked.com/psp/post....

[Scionaw65 in reply to Hidden]

Thank you Jeff. I will read through everything and hopefully it can give me some guidance.

[HilsandR]

Hi Scionaw65

What a dreadful situation your sister is in and I am baffled as to how she has slipped the net with all the services she needs. Generally, on diagnosis, the neurologist gets the ball rolling in referring the patient to the services he/she is going to need, so that is usually social services, occupational health, neuro physio etc. so that they are on the radar right from the outset. Appointments with the neurologist become less useful as time goes on but as long as the support required is in place then not attending those appointments is not really an issue. My husband, who had PSP, was put under the care of a Parkinson’s nurse from diagnosis and I could call her at any time with any concerns. Unfortunately, the different health authorities in the UK do work differently and I know that not everyone with one of these diseases will get the support of a Parkinson’s nurse but should still be referred to the relevant support services.

If your sister’s communication is poor, can I suggest that her husband, as a matter of urgency, gets at the very least a telephone appointment with her neurologist or GP. It will help if he prepares himself before the call with a concise list of all the issues and really lay it on the line that he too is now finding it difficult to cope and not be fobbed off. The problem with these diseases is that not too many of the medical profession know anything about them and it’s possible that some GP’s will never see a case in their surgery so they just don’t have an understanding of it. You say your sister experienced that whilst she was in hospital with a broken arm and that is very common. It does help to have a sheet of symptoms, can and can’t do, to leave with the GP for your sisters records and also to present on any hospital admission.

Right now though it’s time to spring into action, and if your sister is unable to contact her neurologist then the GP has to be first port of call, this situation cannot be allowed to continue without support.

Our NHS is not always perfect but they do a pretty amazing job most of the time so your story does baffle me. Obviously the virus has affected the day to day running of so many things but we are gradually lifting lockdown and in the meantime your sister needs to get her name on the relevant radars.

I am sorry if this doesn’t really give you the answers you so desperately want but it sounds like you almost have to start from scratch, hence neurologist or GP first.

Best wishes and please come back and update us with the outcome.

Hils

x

[Hidden in reply to HilsandR]

Like Jeff my thoughts went straight to Kevin (a wealth of information) checking old posts can be extremely valuable. Sending hugs... Granni B

[HilsandR in reply to Hidden]

Hi Granni B,

Couldn’t agree more, there is a wealth of really good information on old posts, especially around the minefield of applying for CHC, which is everybody’s nightmare. Even if this is the route this poor lady now needs to go down I think she will still need some input from her social worker (if she has one) or GP to get the ball rolling for assessment. It may well be this will be put on hold until lockdown is lifted further. I just cannot work out how she has been allowed to progress this far with no support at all, unless I have misinterpreted the content of her sister’s post. Even help for personal care to give her husband a break would be a good start.

Enjoy your day.

Love Hils

x

[Doublereeder]

Ditto to what Hils has said. Her idea of writing down specific questions ready to go through is a really good one. Possibly could be emailed to the surgery ahead of time?

We've found with Mum that the services of a Parkinson's nurse have been invaluable to opening up, and quickly, other services such as SLT and physio. Your sister's GP should refer her to one and her neurologist could also ask the GP to refer to one. If no joy there, then possibly the charity parkinsons.org.uk/ might be able to help with services of a nurse in the Manchester area.

Good luck!

[HilsandR in reply to Doublereeder]

Glad your mum also came under the umbrella of a Parkinson’s nurse - they really are worth their weight in gold and we were lucky in that even when we changed to a hospital nearer to us, Rod was put under the care of another Parkinson’s nurse who looked after PSP patients as well. I just can’t work out how Scionaw65’s sister has slipped so many nets because even without a Parkinson’s nurse, the diagnosing neurologist usually sets the ball rolling with the different services. We had the support of Rod’s nurse right to the end so we were very, very lucky.

Hils

x

[AnnesHusband]

After Anne was diagnosed with probable CBD, we made appointment with doctor taking along a letter with whats needed taken from the NHS website. He put into action straight away, we had OT, physio, incontinence nurse, social services. I think the longest wait was physio about 2 months, but the rest were in a couple of weeks. She didn't need speech therapist as speech and swallowing are the only things she hasn't got problems with.

[HilsandR in reply to AnnesHusband]

Same for Rod, he was diagnosed with PSP. All the support was there right from the start, including the things he wasn’t quite ready for but at least we were on the radar and I didn’t refuse any appointment for him just to make sure we stayed on that radar, even though it meant different people in and out of the house. He even had some physio at home and I was taught the exercises to continue with him. Scionaw65’s sister doesn’t appear to be on any radar, very strange and really unacceptable, and I just can’t see how that has happened. When Rod was diagnosed, his neurologist was very blunt, gave me the name of a website and told me to go home and learn all I could about the illness. We weren’t left without support though.

I do hope this lady gets the help she needs, seems like some health authorities are better than others, all about budgets I suppose, but even when they are on the ball we sometimes find ourselves having to stand our ground and fight our corner.

Best wishes,

Hils

[georgeg25]

I am sorry you find yourself in this predicament. PSPA produce excellent booklets for Doctors that explains lots about PSP and CBD. They are in medical jargon especially for them. Our GP had never heard of PSP but after reading the booklet he had a much better understanding of the disease. He gave copies to his colleagues in the practice to inform them too. Worth a try. Good luck.

[HilsandR in reply to georgeg25]

That’s a good tip for anyone newly diagnosed, George, to make sure the GP practice has one of the PSPA booklets. We end up learning so much about these diseases we often educate the professionals. I say that with respect; GP’s don’t specialize in these illnesses and quite often will never see a case in their surgery. Likewise, many of the medical profession will not have heard of it or even if they have their knowledge will most likely be zero.

During Rod’s last weeks we had a lovely girl carer coming in to help me get him up and wash him each morning. She’d never heard of PSP but went home, looked it up and came back and told me what she had learned. I was so impressed with her that I gave feedback to the agency on what an asset she was to the company. I do hope they recognized her for going the extra mile.

Best wishes,

Hils

x

[georgeg25 in reply to HilsandR]

I hope she was recognised Hils. That is a sign of real committment to care. We were similar. Our carers were desperate to learn as much as possible about the disease. I am convinced they ended up with a better knowledge of it than many of the medical professionals. An important lesson on raising awareness. My late wife was so appreciative of all the care she received. Most of her carers even came to her funeral. That meant a lot to me.

Stay safe. ❤️

[HilsandR in reply to georgeg25]

That is a lovely story, George, there’s some pretty special people out there and it sounds like your wife’s carers became very fond of her. A friend recently left hospital after being treated for Covid19. She was chatting to a male nurse one day and told him he was worth at least double his salary. His reply was “we don’t come into the profession for the money.” Yes, some very special people and definitely unsung heroes.

Hils

[AJK2001]

Hi I can understand your frustration which must be made worst by being so far away. From what you describe it sounds as if your sister needs help with social care (washing & dressing etc) rather than nursing care, which to be blunt you have to be in a pretty awful situation to get - not being able to feed oneself, breathing problems etc. Check out the PSPA website for information on CHC funding guidelines, this will give you a feel for the level of need where funding becomes available without being means tested.

If the help that is required is "social care", you will only receive financial assistance for this if you have less than£23 250 in savings. If your sister has more than this, she is still entitled to an assessment by Social Services and they will make a recommendation to what care she requires & help identify a care agency but she will have to pay for it. There is nothing to stop her arranging her own care privately through an agency, without waiting for a social services assessment, which from how you describe the situation to me sounds a prudent approach, until social services can arrange a proper assessment.

It sounds as well as though she should have Physio & OT assessments in the home, to see if there are any aids, raised toilet seat, grab rails, shower chair, commode, etc etc which would help. A tip here when asking for this referral, which is can be done through Social Services, stress that toileting is an issue. I recently(just before Lockdown) dealt with Trafford Social Services in Manchester and initially when we were talking about difficulty washing & showering I was told it would be months for an assessment, when I said toileting was an issue it became an urgent referral and they came within a week. It's key that difficulties are not under played, every one has good & bad days, so think about the bad days and how things are then.

Don't put too much weight on a Neurologist appointment, you will probably have to wait 6 months at least (we used to go to Salford Royal about every 9 months) & they can really only do referrals, which the GP should be able to do also. Your sister should have a Multi Disciplinary Team with a key contact assigned to her, through the GPs surgery. In my Mum's case we had a Community Matron who co-ordinated Mum's care and would see her at least monthly (we were in East Cheshire), she was invaluable & called in all the other disciplines as they were needed & was able to prescribe, so Mum very rarely had to see a GP.

If your sister/brother-in-law need support with things like shopping, picking up meds etc contact the PSPA helpline, they may have a volunteer in the area who can help out. Contact them anyway as they are a good source of information. Also when Lockdown is over there are PSP/CBD support groups round Manchester which your sister & husband may find useful to attend.

I hope some of that is helpful. Post again if you have more specific questions and to let us know what happens.

[Scionaw65 in reply to AJK2001]

Thank you AJK2001, you are in my sisters area so your comments are very helpful. Yes social care not nursing would be a massive improvement. I don't believe they have that in savings but they do own their house. Let me try and go down the private care road in the meantime although according to my sister this will be impossible during the Coronavirus epidemic which you Brits are suffering so badly with at the moment. Trying to get appointments has been very frustrating. When I was visiting a couple of years ago my sister waited 3 months to get an MRI I believe it was. Another 3 months to get an appointment to find the results which they had to go to Rochdale to get. We waited 4 hours in the waiting room and then walked in to see a gentleman who my sister did not know. We think he was a neurologist working in the hospital. I asked for a card, he didn't have one and I had to pry out of him who he actually was. Apparently my sisters neurologist had been called away which I understand. We were in there less than 5 minutes. Nothing found and that was it. No further appointment would be provided. At this time my sister had lost complete use of her arm and her hand was "stuck" in a claw. My sister who is very emotional of course just gave up and to be very honest this is one of the issues. She gets so discouraged and gives up. We need to work on that for sure. Thank you again. Very helpful.

[Skye04]

Hi Scionaw65...I am skye04 (Liz)..I live in Canada now so don't know the British NHS system but a lot of people here live there and I am sure will give you good advice..My sister had many falls and also broke collar bone..brain bleed...etc and finally broke her elbow of her one good arm which has now left her unable to use either hand and they have curled up..Her hubby couldn't look after her anymore and she went into Long Term Care...She cannot do anything for herself and is now losing the ability to speak...We have not been able to see her in 2 months....It must be so hard for you being so far away ...I feel your frustration and hope you can get some help here...This is a wonderful group of people..Good Luck...Liz

[Scionaw65]

Thank you Liz, not being able to see your sister must be so hard. Going through all the info. A social worker is supposed to be calling my sister sometime this week. Hopefully they do. I will call my sister tomorrow, its her 67th birthday so will hopefully get an update. Going through all the websites and trying to find the CHC form so we can start this.

[Skye04 in reply to Scionaw65]

Good Luck!!