Reply With QuoteI can only suggest your you Email NHS England, to complain about his lack of treatment.
You can also keep gong to A&E then he will get referred by A&E to neurology.
Sorry if you already done this.
Sadly my Father was diagnosed with this awful disease back in 2019, it was mild at first but over the past 3 months it’s really taken hold.
The GP is refusing to see him which is sickening, prescribing paracetamol over a triage call!
Does anyone have any experience with PD and could advise, namely on slumping head with neck pain?
We are trying to get neuro physio referral but it’s proving difficult with our awful surgery and Covid restrictions.
Thanks
I can only suggest your you Email NHS England, to complain about his lack of treatment.
You can also keep gong to A&E then he will get referred by A&E to neurology.
Sorry if you already done this.
Sorry to hear about your dad. Surely his treatment should be beyond the GP by now? And I'd be reporting him if all he genuinely is doing is suggesting paracetamol. FFS! And surely Covid can't be an excuse not to treat or even see people anymore?
My dad was diagnosed with it in 2018 and has got steadily worse, but at least he sees a specialist. He lives in Suffolk and sees someone in Ipswich, I think.
Unfortunately, the drugs didn't agree with him in the beginning, either making him sick or so tired he was falling asleep. They were in the middle of testing dosages and alternative meds when he went down with colitis, quite common with Parkinson's apparently. So since the end of 2019 everything has been about treating the colitis and very little on the Parkinson's. He's had the colon operation and is recovering so is hoping to go back to see the specialist next month.
It's a strange disease and sometimes my dad can appear completely normal on a video call, and other times he phones in the middle of the night by mistake and is completely confused.
We haven't actually seen him in the flesh since Covid because he was vulnerable after the operation and shielding, and my step mum's a cow, but that's another story.
Sorry I can't offer advice on specifics, but I will ask him who he sees and what his next steps are when I talk to him at the weekend. Luckily, he's retained his humour so it can be funny talking to him.
I'll PM when I have more info.
We are in Wales, I think if we were across the border it would be easier.Originally Posted by Horologos
Our local GP has basically shut its doors since Covid started, terrible service, he is in so much pain now and my Mother was in tears after they refused an appointment yesterday.
I have found a neuro physio and spoke to him, but we need a referral from the GP to see him as they are not allowed to do private at the moment, the GP said they could do nothing.
I have read great things on the web to help with his PD but all need medical referral, we are at our wits end, he is under a private consultant who has been on holiday this past month but is back this week so we are waiting to call and speak to him.
He can cope with the “shakes”, and his meds do help (but need looking at), it’s the neck issue that’s getting to him and it’s getting no better.
You wouldn’t leave a dog in this state, yet the Welsh Health Service are happy to fob him off with paracetamol and forget about him, a man that has worked since he was 14 and retired @ 68 (now 71) and has had prostate cancer in the past 6 years also.
Shocking
I have a vague notion that there is a PD Society, may be able to offer help?
My mother was diagnosed maybe 2016/17, I’ve lost track a bit.
She talked madopar which helps but she gets used to the doses so we have to switch them up in terms of frequency, time of day etc to keep her guessing.
She’s getting worse, and also a little vague so I think dementia might be coming which is another common accompaniment.
Meantime we are looking to get her into a bungalow because the stairs are a real issue, and if you want to get ahead of it do that now.
We are in South Wales and she sees a specialist and the GP has been very supportive. I think paracetamol is something worthy of being struck off the register personally!
PD really is awful for those affected and whose around them. If I could take if off her and have it myself I would.
The charity mentioned above is here.
https://www.parkinsons.org.uk/
I’ve been supporting my FiL with PD for 16 years.
2 years ago he finally went into care which has been a massive challenge with COVID.
His drug regime has been managed by his Parkinson’s consultant but since he’s been in care she has pretty much cut him adrift.
Because he’s been on the medication so long they don’t do much for him.
It’s a grim journey and his current condition is that he has pretty much zero mobility.
Everyone’s Parkinson’s journey is different and you have to fight every step for support.
So far we have spent about £250k on care and have had to sell his house.
His cognition is still reasonable which is worse in a way as he understands his predicament.
We have now been refused CHC funding twice, both going through appeals. This is pretty much a full time job.
Given he can basically do nothing for himself I don’t know what state anyone needs to be in to receive CHC but don’t count on any state funding … his condition requires significant nursing care, our view is that his condition is a primary healthcare need but the faceless CHC busy bodies think his needs are predominately social care so deny his funding application.
Parkinson’s is a poorly supported disease by the NHS and local authorities… I suspect mainly because there are few treatments options.
Last edited by Montello; 7th September 2021 at 22:48.
Re CHC funding, we went through this with my late mother who had PD, my brother never gave them a moment's peace about it and we got there in the end, so don't give up. I think in the end they capitulated just to shut him up!
To the OP the GP's response is a disgrace and you need to escalate. I don't know the process for complaints about GPs but that is the path I would be taking and you need to be clear that is the way you are going. PD is complex and each sufferer needs individual assessment and constant reevaluation of the cocktail of drugs they will end up taking to manage the disease.
one of my first ports of call would be to check what has been done against the NICE guidelines - if they have failed anywhere in this you can use it as ammunition for a complaint to your local CCG (clinical commissioning group ) for failing to follow the UK guidlines.
https://cks.nice.org.uk/topics/parki...se/management/
The first application has been through a CCG appeal and an NHS England appeal and we are awaiting the outcome of that.
The second application is about to be subject to the local CCG appeal.
My wife has put huge hours into this process and I have attended the meetings. The second one we were much better prepared having learnt from the first one.
What does my head in is that we have had dad’s Parkinson’s Nurse and his care home nurse in the meetings and they end up getting overruled by some CCG nurse practitioner who has never even met dad …
It seems the CCG staff have been briefed to diminish and deny all applications. I guess they are broke. I don’t know how they look at themselves in the mirror each morning.
My poor FiL is in a terrible phase of his illness and if they think this person doesn’t have a primary health need then I feel sorry for anyone who does qualify.
If we are unsuccessful I suspect we will hand it over to a solicitor as the CCG has a legal obligation and there is case law on what qualifies and from my reading dad easily qualifies.
As I say supporting a PD sufferer is a tough ask as it’s one of those illnesses that is poorly understood and has limited treatment options.
Last edited by Montello; 8th September 2021 at 09:07.
Huge thanks to all those that have replied, some great info there for us to be catching up on!
So sorry to hear about your dad Marcus (and your mum because she's living through this with him)
My mum was diagnosed with PD some years ago following a fall outside and while she was in hospital it was diagnosed
She was on madipan too - over the course of about 18 months she when’s down hill and lewiebodies dementia was diagnosed
I understand this sometimes accompanies PD - this over took the PD and she eventually needed carers 3 times a day as it was too much for dad and I
Sadly she passed away just coming up for 2 years ago - the ‘history’ is still a bit of a blur but to me is seemed to come on very rapidly - good and bad days where she’d often not recognise me - I was thankful to have spent the last year with her and taking care of her
My thoughts are with you
Some say cannabis vaping helps, cannot comment as to the validity of that statement mind.
My dad and father in law had and have parkinson's
whereas each case is uniquley different, I know a friend's dad was incontinent, wheelchair bound and lost his speech because of it, my dad wasn't and was still playing football with me for a good few years before he succumbed to colon cancer. He never showed signs of any other kind of dementia. He was very with it.
My father in law keeps busy and forces himself to go for long walks every day - it helps with the stiffness - the cannabis helps the shakes but the shakes are not usually the main problem its the stiffness etc. CBD oil helps with appetite too as eating well is very important
Someone's dad I know from school had it from a very early age and kept it at bay with meds and cycling everyday... but it also affected his speech.
keep active seems to be the way to deal with it - and I now it must be hard to want to get up and move when you are all stiff and achy all the time
Last edited by Xantiagib; 14th September 2021 at 14:35.
My sister's had Parkinsons for approx. 8 years, she's deteriorated over the past 2 years and she's virtually wheelchair-bound following two falls which caused a broken hip and broken femour, with the right physiotherapy I believe she would improve mobility but that's easier said than done. She takes a cocktail of medication that helps, but that needs reviewing. From what I can gather getting the medication right helps a lot and that's a job for a specialist not a GP.
I would write a formal complaint to the GP's practice and demand referral, my sister recently changed doctors and there's been no problems in getting her referred to a specialist locally. Following the recent death of her husband my sister's ended up in a care home as she can`t look after herself. Mentally she's still fine but physically she's severely affected, it's an awful disease and the treatment options seem limited.
Sorry to hear about your father, Can you use a private GP, we use Babylon and they can do referrals and do video appointments.
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