Care options uk

[Planthead]

Has anyone been referred to a parkinsons nurse for advice or care, fed up by given the run around by my dads gp, who just keeps saying, its a specialist condition, deal with your neurologist, for non neurological symptoms, such as loss of bladder control and pain.

[Willowden]

Yes. The neurologist referred mum to the Parkinsons nurse when he made her diagnosis back in March. The OT also referred to NHS continence service for bladder issues. The GP hasn't been involved at all, they've been useless.

[messier]

Well in theory mum has been referred to a parkinson's nurse but never seen or heard anything from them. I guess at the moment they blame COVID restrictions and not being able to go into a nursing home. I'd also asked for continence nurse to get involved but as far as I can tell also nothing happened. Nursing home eventually sorted catheter arrangements but still not entirely satisfactory. Makes me cross when I see others from the UK referring to marvellous support they have had from social services and NHS! And mum still doesn't quite meet the criteria for getting anywhere near CHC even though she is dependent on carers in a home.

[Caro2132]

Wow - here in the US, and I know we pay for health care, but Mike’s GP is reachable by text or email and always responds to bladder issues or general health issues not specifically related to PSP. I can also check with the neurologist if I have questions about new medications prescribed by the GP or the hospice doctor. So sorry you have to jump through all the hoops. Our job as carers includes a lot of other hats doesn’t it.

Caroline

[Planthead in reply to Caro2132]

Caro, thank you for your reply, its not all gps, mine is very good, and our health service is second to none, we do pay, through our taxes, I must defend the NHS here, as it treated me, along with many minor aliments, with complete success for stage 3 cancer of oesophagus and stomach, 6 years ago, and my son who had meningitis 5 years ago. However my father's GP, in East Sussex, seems to pass the buck, and making it awkward for my 84 year old mother (who cares for my father), to navigate the system, unfortunately covid seems to be the get out of jail free card or everything now.

[redyi]

Yes we have a Parkinson’s:PSP co-ordinate and was referred to the continence team as well as neuro and physio. The GP has not been involved at all. We also have a District Nurse to contact to treat injuries after bad falls. We live in Oldham and have been very lucky with the PSP specialist as well

[Planthead]

Thank you, that gives me hope, that this is the way to go .

[Northstar1]

We have but not had much contact. We have a community matron who will contact the GP. When is your next Neuro appt. Contact the neurologist Secretary explaining your concerns ask for advice ask the neurologist to write to your GP. Ask your GP to refer to Community Matron service ours is good she will do home visits and can offer a variety of support emotional and practical.

[AnneandChris]

Hello there

We alternated visits with our Neurologist with the Parkinson Nurse at our local hospital. She initially facilitated SLT visits as well. However our GP was amazing and was always available, at the end of the phone and even running round from the surgery in an emergency. In the latter stages he liaised with the Palliative team and was tremendously supportive. We both knew how we wanted Chris to be cared for having completed the documentation together.

He visited whenever needed including the morning that Chris died, and as soon as I phoned the surgery to say it was all over, he immediately came round to do the necessary and to see that I was OK.

The District Nurses were also magnificent, again I only had to phone and one would appear, usually one of the senior nurses who hot to know us well.

All rather deja vu, as Chris died on the 27th December 2019.

[Planthead in reply to AnneandChris]

Anne, thank you, I am sorry to hear of your loss, thank you for taking the time to reply.

[AJK2001]

Mum was referred to a Parkinson's nurse when she lived in London and she was very good, visited about once a month & made us think about how Mum would manage in the future. When she moved up North she was also referred to a Parkinson's nurse - I think over 4 years we saw two different nurses twice (there have been local issues with funding the position I think), again they were good, just not there on an often enough basis. Our regular support came from the Community Matron, who was also able to do referrals. If your GP won't refer to continence services whether Social Services would or an OT? Sounds like the GP has never come across PSP before. Have you tried giving him a copy of the PSPA guide for professionals. If you ring the PSPA helpline they will send one out to you. Might give the GP confidence in how to manage the condition. If you are not happy with the GP is it possible to move practice? Or could you see a different doctor at the same practice? Is there a practice manager you could talk to about your concerns?

Is there a local Parkinson's support group near you - they may be able to help. There is a group near us (which unfortunately I found out about too late) that is very open to PSP sufferers & their carers.

Hope you can get some resolution, it's hard enough without having to battle the people that are meant to support you.

[Planthead in reply to AJK2001]

Ajk, thank you for your reply, I agree with what you say, however my mum is ld school, and just to in awe of this gp, who I think is barely OK, and just counting the money in his pension pot, and his days to retirement. She will not push him for referrals. We have a local psp group, but she is not interested. I have found that the local district parkinsons nurse, and they specifically mention psp and cbd, for referrals.

sussexcommunity.nhs.uk/serv...

[Nanny857]

Sorry you are not getting the service you deserve.

We were told we would have been referred to a Parkinsons Nurse but the position was vacant.

Our GP was very hands on referring

bladder issues to Continence Nurse and Urologist. At the start when W was having falls, he referred W to Falls Clinic and Physiotherapist. He was also keen on me passing on any information/ documentation I received from the PSP Assoc. and sharing this with other GPs in the practice. xx

[Planthead in reply to Nanny857]

Nanny, thank you, I know the pinch point is the gp, will have to work around him, he one of the type, that have shut up shop due to covid, but is happy to take all the money that the govt, has thrown at them. Unfortunately my dad is a bit of an inconvenience and my mum will not challenge the practise.

[Hidden in reply to Planthead]

You are not alone with a GP who does not seem interested I thought the GPs job was to co-ordinate the care of the patient ie: in our case what the diabetic people suggest, the eye hospital suggest what the neuro suggest and take an overview of the case but our gp has not seen my partner in maybe 2 years or more, in fact once extra physio was suggested she rang me and said "well he has had physio already and it hasn't worked" I stood my ground and he did get the extra physio. and it is not about whether it works or not mobility is impaired however it can help to improve a situation and not make things worsen more quickly I thought she would have understood that. I will stop ranting. However for you I think the suggestion to speak with the neuro secretary is a good place to start as I find our neuro team are more than happy to help you sort what may be needed and I hope that would be for you to to, is there not a movement disorder nurse attached to the neuro team as that is who we have been in touch with over the years and she has helped loads. best wishes

[Planthead in reply to Hidden]

Thank you, that's very helpful.

[Scottoppy]

We have been referred to a Neurology team that includes a neurologist , a neuro Physiotherapist and a specialist nurse. We are in regular contact with them via a video link. Since my wife's last fall which hospitalized her, we have had morning and evening home carer support. This is in York UK, which appears to have a very good grasp of the needs of PSP patient and their carers. Don't forget, the squeaky wheel gets the grease, if you need help scream for it.

[Davem62 in reply to Scottoppy]

Could you give me the name of your neurologist please. We are also under York hospital neurosciences

[Scottoppy in reply to Davem62]

DR Proudfoot

[Pjgil]

Dad was diagnosed 4 years ago and she parkinsons nurse had been in touch with mum twice. Completely useless as far as I am concerned.The ot and salt team have been amazing. So has social services. They have been a great help and as for the gp and District nurses, who are they?!? The DN was asked to attend to assess dad for a hospital bed, they couldn't be asked to attend and were nagged several times by the ot and they just signed it off without a visit!

The neurologist can't do much either. Unfortunately its just a monitoring exercise for them.

The OT can get the continence nurse on the case for you. You can be assessed for either pads or conveen then have them on prescription. Dont forget to register with your council for the nappy bag collections when you get to this stage.

Pj

[Inarticulate]

Yes. Dad has a Parkinson’s nurse and I tend to put in concerns to them rather than the GP because they’ve got the specialist experience. We’re in Derby in the UK. We’ve also had phone calls just to check how it’s going.