Access to specialised Parkinsons care by a consultant neurologist with a special interest in PD

Access to specialised Parkinson’s care, on the NHS, by a consultant neurologist with a special interest in PD has been difficult for me in London as a new arrival in the city. Does this mirror other’s experience? When I asked to see a consultant neurologist with this particular interest in PD on arrival 18 months ago I did not succeed. I joined the E referral system and the named consultant that I had identified with a particular interest in PD did not receive my referral.
I tried again four weeks ago. I received an appointment for a different hospital altogether with a six-month waiting time.

Where I live in the West Country there is a five or six month wait to see a neurologist (no point in asking if s/he is a movement disorder specialist). Follow up appointments seem to vary, but very few people seem to get the six monthly appointments recommended by NICE. I don’t know if London is worse or better than the rest of the country, but it sounds to me like your experience is about average.

I begin to think its the same throughout the Country - definitely difficult, if not impossible to see a neurologist or PD Nurse in Leicestershire…

Watch this space! I have a few things I want to say about my experiences with a Neurology Department.
Jules77

Hi all,

At my Hospital there were two routes to appointments to discuss your PD problems; Elderly Care or Neurology. Two department one would think, should be working together to help patients control this dreadful disease? But no, that’s not how it has worked out in my case.

My GP’s diagnosis that I may have PD was in early 2011. My condition was confirmed as Ideopathic Parkinson’s Disease in June 2011. I was placed under the Neurology Department and had reviews every six months, although the appointments were not automatic and had to be made through the Hospital’s Appointment Department.

It’s a long story so I won’t bore you with the detail but in early 2015 I was persuaded by my Physiotherapist, backed up by other Elderly Care Patients, to see the Elderly Care Consultant, who had specialist knowledge of PD, to help with various aspects of my condition. This I did in mid-2015, never assuming that there would be a problem.

I soon discovered, that was not the case. The two departments did not seem to have a good working relationship with each other to the point where it was made clear, you chose one or the other. I chose to stay with Neurology but was told that I would have to make an appointment for six months time. This I did. With Elderly Care (I didn’t realise at the time) it was an automatic appointment, so a bit later I received an appointment to see the Consultant in Elderly Care again, assuming this had been approved by the Neurology Department.

I then found out my appointment with Neurology had been cancelled. From enquiries, it was soon clear to my mind, that the two departments simply weren’t working together and from anecdotal information there was some sort of rift or schism between the two. So by default, I have stayed with Elderly Care and last saw the Consultant in a March 2019, who wanted me try a different drug routine, to be followed up with an appointment in September 2019.

I duly attended the appointment only to find out the Parkinson’s specialist Consultant had retired. I was seen by a new Consultant, with, it seemed, little knowledge of my PD history or the specific drug routine I was on. Guess what! He suggested that I be referred back to the Neurology department.

So Hey Ho, here I am with a 33 week waiting list (from last September) to see someone in Neurology. That means it will be from March 2019 to May 2020, a year and two months, between seeing a Consultant with any knowledge of PD, even though I’m on a new drug regime that needed following up and a deteriorating condition.

Quite frankly I find the whole experience vey stressful and what’s more, inexcusable. Local Parkinson’s Care are aware of the issues and have tried to get things moving but have little clout.

It has been suggested that a Private appointment may be the best option.

You couldn’t make it up. Or could you?

Jules77

Hi…Jules77…
My Husband has not seen a consultant or a PD nurse since 2018…to say we are disgusted with the whole support he is offered is an understatement…

Hi Babesbrown and All,

We all know that Parkinson’s UK do a splendid job and like many charities need to balance funding decisions based on income from the public or sponsors.

I wondered if enough is being done by hospitals in the UK to set up specialist clinics for Parkinson’s rather waiting for an inordinate length of time to see a Neurologist or the necessary specialist.

From my experience there is not a ‘Parkinson’s Team” dealing with this awful disease and one is at the mercy of a disconnected appointments system and a problematic choice or directive on which clinic or discipline to consult with.

My Sister also has Parkinson’s and comes under the Royal Derby Hospital, who, as I understand it, have the substance of a Parkinson’s team, where various clinics who may have a role to play liaise and even have regular meetings regarding PD Patients.

Do we need a National push to establish Parkinson’s Clinics in every hospital in the UK?

Jules77

My local hospital does not even have a neurology department or resident neurology consultant. There is a huge shortage in nurses nationally and of neurologists. I don’t know what the answer is, or even if there is one. It is clear that the NICE guidelines, that PD patients should see a neurologist every six months and the PD nurse with the same frequency, are not met in most of the UK, possibly not anywhere in the UK. An aspiration for Parkinson’s clinics at all hospitals is unlikely to be achieved in the foreseeable future, or am I being too pessimistic?

Hi everyone who responded to my question about access to specialised Parkinsons care,

Clearly there are many negative experiences, and it would be good to have the positive as well - sometimes we all need this, and to know that there are good services which could be replicated in those areas which haven’t got a decent service.

Having said this, my own experience with the E-referral system in London has been very poor. I wonder if others have shared this experience with E-referrals? I would be very interested to find out - and perhaps this could be referred on to Parkinsons UK, as an issue that needs resolving - so that something positive can come out of this.

Thank you for all your input, and sharing your experiences.

David

Hi everyone, :wave:

It’s a real shame that so many of you have had similar experiences with the lack of specialist care available to you.

I think the most effective way to raise your service issues and in particular poor ‘customer care’ is via the communication channels that all patients and service users can access locally, to share concerns about NHS service provision as well as reporting poor experiences of customer service. If these channels are used, then resolution is often more effective and quicker.

It’s great to see you all supporting each other and offering advice, however, I’d encourage you all to be active in using the NHS feedback ‘channels’ already in place to ensure your voices are being heard. Information and empowerment in how to raise feedback would definitely aid quicker and effective resolutions of issues, as well as supporting the NHS recording internally service concerns. You can start this by visiting the NHS’ feedback section on their website here: https://www.england.nhs.uk/participation/get-involved/how/feedback/

Of course, we’re always here to offer more help and support so do give us a call via our helpline on 0808 800 0303.

Best wishes,
Reah

Thanks Reah, will do.

1 Like

Hi dbeales126

My name is Sharon I have a Consultant and Nurse in a London hospital. I was diagnosed in Charing Cross Hospital and have been going there ever since which is 13 years there abouts…
They have a team of Neurologists there. I have regular meetings with the Nurse and as I have had PD awhile and is controlled very well I now only see the Consultant once a year but I can ring him if I needed to or make an earlier appointment.
I actually now live in Devon but I still go to London to see my Nurse and Consultant as they are quite happy to see me. Which hospital did you try and did you go through your GP? How long have you had PD and had you been diagnosed prior to coming to London?

Sharon

Hi Rea,
The problem is the NHS does not manage expectations.
The Gov has announced priority is acute services. So those of us needing chronic services need to read, blog, and share in a self-help way.
The NHS cannot offer cures, does not communicate the known things that worsen symptoms, (loneliness, fried and canned foods) or the known things that delay symptoms.
Go to ‘Food for Thought’ on the 'Science of Parkinsons website.

Hi @DaveThomson25,

Thanks for sharing your thoughts, I can definitely appreciate where you’re coming from and judging by the comments on this thread, there are members who share the same sentiment. As I said before, the best way to get your voice heard is to utilise the NHS feedback channels.

Also, I’ve had to delete the link you’ve shared because it is appearing as spam. :frowning_face:

Best wishes,
Reah

Hi DaveThomson25,

I take issue mildly with your posting above.

I’m not sure what you mean by the NHS managing expectations. I would agree that all PD patients have a range of specific symptoms that are unique to them and the progression of the disease varies considerably and that here are many factors that each individual carries, such as their physiology, psychology, age, environment (in the broadest sense) diet and personal fitness?

I can’t see how the NHS as an entity could do this. They have a reasonably good web site that can and does communicate general guidance on the issues we mention, but clearly it is up to each hospital area to appoint individual specialists to see individual patients and build up a dossier and a series of recommendations that will inevitably change as the disease progresses. Parkinson’s UK also has an excellent website that advises and helps many sufferers of this awful disease.

The big problem is that as we all know the NHS is underfunded and hospitals cannot afford to set up specialist Parkinson’s clinics. We get back then to patients having to wait an unacceptable amount of time to see a Neurologist or PD specialist or even a Parkinson’s nurse, unless they pay to make private appointments. This is where this thread started.

Of course the NHS cannot offer cures. I’m sure they would if they could. Nobody can currently offer a cure. There simply isn’t one! I would rather listen to one.

And yes I agree that self help groups such this forum, or local groups can help PD sufferers in many ways.They should however beware of “Greeks bearing Gifts’. There are some opportunists out there, offering quack cures or ridiculous machines or devices that have no benefits and certainly no cures. Vulnerable or desperate people can often fall victim to them.

Jules77

Penultimate paragraph above, should read I would rater not listen to one.

I agree with Jules 77.