I was diagnosed 26 months ago by a private neurologist whom I had consulted because of the delays I was experiencing getting a diagnosis on the NHS. I continued seeing him until the end of 2018, but then decided to see if I could access NHS treatment.
I saw an NHS neurologist in March '19 who drew up a treatment plan, that I should see him every six months, and the Parkinson’s nurse every six months, with the appointments staggered so that I saw the nurse three months before/after the neurologist.
Due to lack of resources this treatment plan has never worked. I’ve not been offered any more appointments with the neurologist and now I am only being offered three monthly telephone appointments with the nurse.
I can’t decide whether this is adequate or not. At the moment my condition is fairly stable. I’ve been on 5 Madopar a day since February and don’t feel that there has been significant deterioration. I do have mild dyskinesia and wearing off, but not enough to severely inconvenience me. Physically, I’m actually fitter than I was a year ago. However, I want the reassurance of knowing that if I do experience deterioration, I can get my medication reviewed promptly and I’m not convinced that a three monthly telephone conversation is sufficient to monitor my condition, particularly given the agonising delays for NHS care that I’ve experienced in the past.
@Jane_L hi Jane, its certainly a dilemma you face. I can only give you an account of what we go though with the NHS. Mum has been dx for nearly 10 years now and use to see a neurologist but was quickly moved onto a “care of the elderly” consultant (which I’m sure you’re a long way from even considering!) Her condition varied greatly to start with but now we are unfortunately at the finally stages (we don’t know how long it will go on for, she’s 87 in December.)
She now refuses to leave the house for any hospital appointments and has a home visit from the Parkinson’s Nurse every six months. The assistance given at these visits varies from a 5 mins recap of her current medication regime to perhaps in the past a referral to ‘neuro-rehab’ to assist with equipment or speech therapy or physio. We have a telephone number for the PN which we can ring (and usually leave a message, to be returned) for advice between appoints. From my point of view, and taking out mum’s refusal to attend hosp., our experience of the PN is pretty reasonable. They seem to have a pretty good knowledge of the drugs and regimes available and in fact she has always suggested to the consultant what mum should be on, rather than the other way round.
The PN service varies according to geographic location and I would suggest getting in touch with your local Parkinson’s support group perhaps to see what others think locally. (We are in Essex)
Wishing you all the every best on your journey and my advice is to enjoy everyday as it comes xx
I only see my Parkinsons nurse every six months and my consultant about every 10 months. However if I ever have any problems I can phone the Parkinsons nurse at any time if I have a problem.
Hi Jane. We had a similar dilemma & my husband saw a movement disorders specialist privately after an appalling experience with a general neurologist at our local NHS hospital. Following the private consultation & diagnosis, supported by a positive datscan, my husband was transferred back into the NHS under the care of his new consultant
My husband had one appointment back in the NHS and the consultant asked to see him again in 4 months but that appointment never materialised because of demands on the service. Instead of a FU appointment, after 6 months waiting he received a letter asking if he still wanted to stay on the waiting list for one! By then we were both anxious as my husband had had another fall resulting in a second fracture needing surgery, and had developed other symptoms not usually seen until later in the disease. We have never seen a PD nurse.
We arranged to see the specialist privately again and have now elected to continue seeing him privately simply because it allows us to get on with our lives. We know we are lucky that we can afford to pay what we feel is a reasonable fee. The consultant is aware of & not happy with the situation in his NHS clinic but it seems to be the reality in many neurology services now, too few resources to meet demand. Only you can decide what is best for you but we wish you well.
The discrepancy in NHS funding between care for patients with degenerative neuro diseases and, for example, cancer care is grossly unfair as both are serious conditions with a huge impact on quality of life for the affected individual and their family.
Morning…my Husband was told he would be seen every 3 months alternating between a consultant and PD nurse…that has never happened…diagnosed 3 years ago and has only seen PD nurse twice,last time was over 1 year ago and 3 times with a consultant,the last appointment again was over a year ago and he has never seen the same consultant always someone different…to say he feels let down by the NHS is an understatement…not good support at all…
Thanks for your replies, which have helped me decide what to do. Since I am stable at the moment and have no pressing need to see a neurologist, I will wait another six months to see if I am offered another appointment with an NHS neurologist. If no NHS appointment is offered, then I will resume seeing the private neurologist I saw previously every six months.
I will continue my telephone appointments with the Parkinson’s nurse, but I don’t think these will be sufficient to monitor my condition and I won’t take risks with my health.
NICE publishes evidence-based recommendations for health and care in England (not Wales or Scotland, although they may also be used there). The express aim of the Institute is to prevent ill health, to promote and protect good health, to improve the quality of care and services and to adapt and provide health and social care services. The guidelines are widely used to define ‘minimum standards of care’ in the UK, so that patients and carers using the National Health Service (NHS) know what they are entitled to receive from healthcare providers. Commissioners and Trusts are expected to adhere to NICE guidelines and to assure the process through regular audit. If this does not happen, then providers would be open to censure, for example by the Health Service Ombudsman in the event of a complaint, and may lose their eligibility to bid for provision of specialised services.
Communication
In the 2017 guidelines, great emphasis was placed on empowerment and provision of information in ways that are accessible to patients and carers. Since there has been a trade-off between the time available in clinic, especially outside of London where there is a shortage of neurologists,4 and the provision of comprehensive information; in practice, a nurse specialist service is required to bridge this information gap.
Review of diagnosis
1.2.5Review the diagnosis of Parkinson’s disease regularly, and reconsider it if atypical clinical features develop. (People diagnosed with Parkinson’s disease should be seen at regular intervals of 6–12 months to review their diagnosis.) [2006]
Allied professional services
Although the guideline falls short of recommending that nurse specialist services should be provided, recommendation 1.7.1 states that people with Parkinson’s should have access to clinical monitoring, a continuing point of contact for support, home visits and reliable information for themselves and carers. In practice, because of the shortage of Consultant Neurologists and Geriatricians in England, it is difficult to imagine how this could be effectively achieved without a Parkinson’s nursing service
The problem of ongoing monitoring of patients with chronic neurological disease is nowhere better illustrated than with Parkinson’s disease. Patients are faced with progressive disability and require incremental support, and the condition is characterised by fluctuation and crisis that can be averted only by prompt attention.
Thank you very much for that. It had not occurred to me to look for NICE guidelines (though I can’t think why not). It confirms my opinion that what I’m being offered by my local NHS is not sufficient and I will probably have to go back to seeing a private consultant.
I also found ‘Sarah’s Story’ interesting. There were elements I recognised from my own story in both the sub-optimal and optimal versions. I’m going to print it out so my husband and I can both learn from it.
Why don’t you take the printout with you to your next appt and discuss with the consultant what you think could be done better to help with your treatment according to the guidelines. Don’t forget when you go for your appt you may be “on” and the Dr might think you are like that most of the time. Your Parkinson’s journey should be steered by you. Youhave a voice and it should be listened to.
My phone appointment with the Parkinson’s nurse was going to be at 9 am this morning.
At 8,30 am I got a phone call from her colleague cancelling it. That’s it for me with the NHS; I’ll make an appointment at the Nuffield and until I need DBS I won’t be trying to access NHS treatment again.
It was a similar situation with an NHS consultant follow-up appointment, cancelled after a long wait (4 months overdue by then) that sent us back to the private sector 6 months ago & we haven’t regretted the decision. But grossly unfair for those who have no choice.
In fact, after I rang my NHS consultant’s secretary and explained the situation, she promised me an appointment in January, so I am going to stick with the NHS for the time being. But I don’t see it lasting. My PD is fairly stable at the moment and I only have one or two minor matters to discuss with a clinician, so I can afford to wait, but once my PD progresses what I’m being offered on the NHS is not going to be adequate.
We were told 3 years ago that the appts would be 3 months PD nurse then 3 months later Consultant…4 appts a year…reality is nothing like that on the NHS…not seen anyone for over a year…and was only seen 3 times in the 2 years prior to that…PD patients are certainly the under dogs in the priorty list for care…
The promised January NHS consultant appointment did not arrive. I rang and was told no space was available in January after all and was then offered an appointment in April.
When my phone appointment with the PD nurse was cancelled, I was told I would receive another one. That never arrived. So I rang and left a message. This resulted in a phone appointment a few days later. The nurse then told me that there would be no more appointments with her. Under the new system, she would reply to messages and see patients as necessary, but there would be no regular reviews.
At that point I gave up and made an appointment with my private consultant at the Nuffield, whom I saw today. It was a very productive review. He has tweaked my meds again and I’ll be seeing him in 6 months.
He was concerned that I’d given up on NHS care again. I explained that it is not just the infrequency of appointments that I find discouraging, but the fact that I have to be a squeaky wheel to get each one. I feel like I’m being seen as difficult and demanding, when I’m just expecting the implementation of a treatment plan already drawn up by the consultant. I just don’t want the hassle; it is easier to pay.
Sorry this has happened to you but it’s precisely why my husband went back to seeing his neurologist privately earlier this year. I don’t think the annual surveys carried out by Parkinson’s UK pick up these issues as they don’t ask the right questions. We are lucky to be able to pay as it is not an option for some. As a supporter of the NHS ethos, it makes me sad and is very unfair.
Sorry to but in on the “conversation “.
May I ask what part of the country are you and who is the consultant you are using.
Just don’t feel we are getting the support we need for some piece of mind which adds to the symptoms.
Thank you
I don’t know what to say, I feel so sad reading all this. I do not blame you for looking for better care, I keep totting up my savings and wondeer what I will be able to afford when I can no longer cope independently. But when voices with the guts to complain opt out, then overall standards fall further. We have to stand together and shout. It is so hard to do because the only person you can reach to shout at is not to blame, overworked and underpaid. I’m not talking about the mess now, but before this started. When this ends it will be worsse than ever because so many in NHS are preparing to jump ship as soon as they can, they are depressed and exhausted.
Sarah’s story is referenced in this NHS Rightcare toolkit. I had saved it to my computer at the end of 2019. I don’t know where I got it from originally but I note that it is available on the PUK website information for professionals. https://www.parkinsons.org.uk/professionals/resources/nhs-rightcare-progressive-neurological-conditions-toolkit. I won’t bore you with my thoughts on the parlous state of NHS care for PwP at the moment but I usually say that I am currently following the B&Q protocol i.e. Do it Yourself.
