Anyone with the rare dementia service in UK and with the district nurses what's your experience?

[Cinderella80]

Hi friends my mum has PSP and I would like to ask if anyone has been referred to the rare dementia service in the UK and where about in the UK? Also is anyone had any experience with the district nurses in your area in the UK? My mum was referred to the rare dementia service in Birmingham UK since she was diagnosed with PSP. In our experience they have not been really helpful. The OT from their service didn't really advice me on how to manage mum in lifting or lowering her although he did provide a few useful things for eg a bed guard but he has left since March and no one has told us about a replacement.I phoned them because mum needs a head support perch stool but the receptionist didn't know who would be dealing with that side looks like no OT available anymore. She said she would get back to me but no one has. The doctor who is with them has been no help at all she came round but looks as though she wanted a day out no new info or help from her. The speech and language therapist just knew generic stuff I ended up educating him. Never seen any of them since last year.You would think they would keep an eye on mum because it's a progressive disease. And the district nurses are of no help they just phone once a month but they don't want to hear any concerns if I tell them so many times I've told them different concerns but they just seem to put it in one ear and take it out the other. It's very frustrating. We are in Birmingham UK. I would like to hear of your experiences and where about in the UK you are. To see if it's only Birmingham with the worst services. Thank you I would very much appreciate your responses.

[AnneandChris]

Oh dear you do seem to be experiencing a hard time with so little support.Perhaps we were fortunate as our GP, District Nurses and some of our carers had previous experience of a patient with PSP.

Due to minor injuries sustained in falls we had regular visits from our nurses. Both Physio and OT were regular visitors and would always return phone enquiries. They provided equipment and advice which enabled me to keep my husband at home. Equipment included a wheeled commode which was also used in the shower, a hospital bed, a Sara steady to assist with mobility and various other items to help with daily living.

Apart from visits to our neurologist we also saw the Parkinsons nurse as PSP comes under the Parkinsonisms umbrella, but is not Parkinsons. However, there came a time when we were recommended to the Palliative care team and my GP liaised with them.

There were times when I was educating paramedics and nurses on PSP as they had not come across it before, but everyone was more than helpful.

Please speak to your GP who should be able to put you in touch with the relevant departments. Also contact the PSPA here in the UK who have an amazing help desk and will be able to advise you.

I am in Gloucestershire and it is 2.5 years since my husband died and the demands on the NHS have been such in recent years that services may have changed.

Keep on keeping on you're doing a tremendous job looking after your Mum.

Anne

[Willowden]

PSP is hard enough without having to chase around for support that you and your mum should be getting. I’m sorry you are in this situation.My mum was diagnosed just before lockdown and it was a scary time trying to deal with her deterioration on my own.

However once all the services were involved, they were helpful. The district nurse came once a month to start, then once a fortnight as things moved on. She was always reachable by phone. She was great for referrals (and chasing them up) to other services, practical advice and also keeping an eye on my wellbeing.

We’ve been involved with two SLT and two Parkinson’s nurse and they have been invaluable.

None of it changes the horrible nature of the condition but having support does help.

My advice would be keep chasing things up, keep nagging your GP to chase up referrals and do ring the PSPA helpline. They were my lifeline when I felt so alone at the start.

It’s disappointing that services do seem to vary between areas and that shouldn’t be the case.

I hope you get some help.

[Autumnstone]

Hi Cinderella I'm sorry you arent getting support. It was a bit like my husband who got diagnosed just before lockdown. We left on our own for a long time , but now as things have progressed we have the local Hospice on board. Your doctor should get that organized for you. I expect the Pallative care team will contact you then. I know it can be so frustrating having to spend most of the day phoning people & chasing them up but if you are struggling then a call to PSPA helpline might help you cope until the right people get involved with your Mums care. Stay strong & hang on in there, your doing a marvellous job😘

[Scottoppy]

The first thing you must do is to demand from the GP an urgent referral to the hospital neurology consultant. Then send to the GP the professional notes provided by the PSP Association. (all online). The Neurologist must then refer you to the Neurological Social Worker. When you get a meeting with them get them to do Check List assessment for CHC funding. In the mean time keep pressing the local services, District Nurses, Continence Team, SALT, etc giving them the same documentation from PSP. Do not let up for one minute, remember, "The squeaky wheel gets the grease." Keep pushing the fact that PSP is not Parkinson's and requires different management. It is progressive, erratic and unpredictable. Good Luck.

[Cinderella80]

Hi friends Thankyou for taking the time out to respond. Unfortunately our gp is useless he thinks mum has had a stroke! I phoned the rare dementia service to get hold of a OT last saw one in March he has now left. The receptionist did not know who would be dealing with mums case since he left she said someone will get back to me no one did. Phoned again on Friday now they are saying they will have a meeting on Tuesday then will decide when a OT will see mum. All I wanted was some new equipment for the bathroom just a perch stool with a head support! As my back and body is supporting mums head and back to brush her teeth. I am so amazed and dissapointed of the lack of support of these people who are supposed to help. Shame on them!