lack of help

[Newsymum]

A friend of mine was diagnosed with CBD last year, but started with symptoms about 4 years ago. It started in her left hand, she lost control and dropped things. At first it was thought she had had a stroke, but the symptoms have gotten worse. She has no coordination, or balance. She falls regularly, always banging her head. Her speech is not good. The care where we live in West Yorkshire, England for someone like her is non existent. She has just been in hospital with hallucinations thought to have been brought on by a water infection. Even after antibiotics the hallucinations continue. The hospital just seemed to want rid of her with nothing planned for her future care/needs. Her daughter is at her wits end with where to go for help/advice. She was discharged to a local care home for ‘assessment of her future needs’. Her daughter, after seeing the set up there, refused to leave her there and she is now in her own home which is not safe for her. She has gained a lot of weight, probably through not being mobile and needs 2 people to support her when standing/walking. I see, on the PSP website talk of contacting your neurologist, she hasn’t got one. After being diagnosed there has been no contact, further appointments or anything. She has been given a wheelchair and a toilet aid chair and that’s about all. Can anyone give advise as to where we go from here. Sorry this is so negative.

[Helen119]

Hi, my husband died of PSP just over a year ago. I looked after him all through his illness. We were referred to our local hospice by our doctor, that was the best hung that happened. They helped me get supplies for my husband. They came and assessed him, ordered walkers chairs hospital bed and thru time as needed a lot of other things. They were also there for me if I had a problem, I could phone them and if they thought they needed to come to see themselves they did. My husband also had respite several times over the years. They also taught me to move him safely.

I had carers coming in when he stopped being able to walk and be moved from the bed, to wash and clean him. Although in the end I did all that myself,

I think if you contact GP , hopefully you can get a referral with the hope they can help.

Take care

Love and hugs Helen xxx

[Bergenser]

Please contact the PSPA if you or your friend's daughter haven't done so already - and keep calling on them. If they have anyone in your area that's particularly helpful, but even if they don't they will be very helpful in finding the right contacts for you. Every County is different but your friend will need multidisciplinary support, there must be a neurologist who can consult, and then Adult Speech and Language Therapy, Occupational Therapy and a Parkinson's Nurse would be the minimum - it sounds like your friend has mainly been supported by GP and social care and that is not adequate for CBD or PSP, regardless of age. Best of luck on this difficult journey. Your friend is lucky to have you fighting their corner. Hope & hugs🌻🫂

[Newsymum in reply to Bergenser]

Thank you so much for replying. I have spoken to my friends daughter and she too is grateful. She is going to see the GP on Monday (hopefully) and make a nuisance of herself until someone listens. Meanwhile, I am going round to see if there is any way to make her house safer for her. She gets very upset at times, but I can still make her laugh. They have installed a stair lift (at their own expense), and she can still (with help), use that to go up to bed. Getting her to go to bed is another matter. When she fell down the stairs she broke her collar bone and it hasn’t healed well, so is painful , she can’t turn over in bed so if she is not comfy she can’t sleep. Her husband is deaf and has his own health issues, but is doing his best. I will keep in touch with this forum and will take your advice and contact PSPA come Monday. Again, thank you, Pat

[Milocorn1]

Hi,

So sorry to hear that your friend is going through this without adequate support of a multidisciplinary team. Just a quick message to say that my Mum has also been diagnosed with CBD and we have various specialists involved.

I’ve listed below who we liaise with just in case it helps your friend’s daughter when she speaks to the GP. Unfortunately, with so many specialists being involved there are always risks of breakdown in communication between specialists/services/myself, so I’ve learnt that making that extra phone call to confirm that an appointment has been made definitely doesn’t go a miss.

GP

Social Services

Neurologists

Parkinson’s/Neuro Nurse

Neuro Physio

OT

Mental Health team

Speech and Language team

Dietician

Bladder and Bowel team

District Nurses

Sending lots of love to you, your friend and her family. xx

[maxandpoppy]

Just to add a quick note as I also live in West Yorkshire - Bradford Airedale area. Everything in the other replies is spot on especially re PERSISTING and double checking. My husband was bedbound for over 3 years and died last July. We think he most likely had MSA but all 3 conditions can overlap. The MSA trust is very good. The services ARE there - if you have a proactive GP they should help - but Airedale Hospital neuro nurse was our lifeline for getting what we needed, including funding. Tell me if your friend is local to me and I would be happy to be in contact

[Newsymum in reply to maxandpoppy]

We live in Normanton, near Wakefield. The last time my friend fell she was taken to Pinderfields, Wakefield, and quickly transferred to Dewsbury on a geriatric ward. They weren’t interested/had no knowledge of her condition and as soon as they deemed her, I can’t remember the phrase, but it was something like medically fit, they wanted rid of her. She was supposed to go somewhere to be assessed for her future needs, but the care home they sent her to, was just that, a care home where, as you probably know, it’s just a waiting room for the end. Thank you so much for responding. The replies I have had have given me hope that there is help available, and me and Sandra’s daughter, will fight the good fight.

[Newsymum in reply to maxandpoppy]

We are in Normanton, so not particularly local to you. I went round to see her Tuesday before Easter and it wasn’t a good visit. Her daughter says she thinks her mum is a bit overwhelmed by/or thinking that people are “telling her what to do”. I think I already mentioned that I think her personality is changing., plus she has now been diagnosed with “several clusters of blood clots” in her lungs and has been put on blood thinner tablets. Her daughter has also “backed off” a bit to give her parents a bit of space. I went round yesterday for a short visit which was pleasant. I think I will just pop in once a week. Her daughter keeps me informed as to what is happening. I don’t know whether she has read this forum or not. It’s not easy for her, she has a family, a job, her mum and her mum in law all at once. Not an easy ride for her. Thank you so much for replying, I’ll mention this forum to her again.

[Rose1sunflower]

my husband has PSP. I contacted PSPA when he was diagnosed and received lots of useful information, they also have a monthly video support group, which I have found really useful. All the people there know what PSP & CBD is, so you don’t have to explain it. They know where to ask for help and what to ask for. The group I am with covers Yorkshire, and I’ve learned there are great variations of care even within Yorkshire. Im glad your friends daughter is going to see Gp next week. (PSPA have booklets for health professionals and Carers), referrals to Neurologist, specialist nurse and Palliative Care are first on the list. There is financial support available too. I was going to put a list of what could be available, this has already been mentioned. Be aware though that there are waiting lists for things like Speech Therapy and OT, so don’t leave it, get on lists now. There seems to be a post code lottery for care and sometimes you have to be really proactive in gaining access to it. Good luck

[bichonbear1]

Hi, sorry to hear what you are experiencing, the diagnosis is challenging enough let alone having to ‘fight’ the system. There has been great advice already, my mum was diagnosed in 2021 and the first year was very stressful understanding things and learning about how we go about getting support. This forum has been an absolute godsend in terms of advice, guidance and learned experiences and has helped us no end whilst preparing us mentally for what is to come and prepare ahead. Preparing 10 steps ahead is definitely my biggest bit of advice….prepare for what will be needed in the months to come and not just for the here and now. I wish we had appreciated it more so. The trigger for the support we got was contacting adult social services and breaking down in tears and desperation for help. Sadly, it took that for them to listen and react. An occupational health visit was finally organised and was critical looking back. We were struggling for the GP to understand the severity so I found a local hospice at home service and broke down during that conversation (the desperate need for help and sheer frustration was taking its toll). We had a visit and the support from them has been invaluable also. It requires the patience of a saint and sheer tenacity to get the much needed help. It shouldn’t be this way but it’s our experience. I think it does vary from local authority to local authority so I hope yours is easier to work with. I wish you all the very best as you navigate all this. Best Wishes.

[Dancingbirch]

This is all new to me too, but I have discovered that in our county (Gloucestershire) you can go online and refer someone to Occupational Therapy, Neuro Physio, and Speech & Language Therapy. Ie you don't need your GP to do the referral. May be worth seeing if Yorkshire NHS Foundation Trust also offers self referral. But DO also see the GP and ask them to refer you. In my limited experience it is best to try both routes simultaneously. Wishing your friend love