Militant Millicent

Hello Friends!

I haven't been on here for a while. I never thought I would hear myself say this, but my interest in social media is beginning to wane rapidly.  I am very tired these days, sleeping around fifteen to eighteen hours a day, and while I do plan to write a catch-up blog, it will have to wait until I have a little more energy than I do at present.

Shalom house hospital closed at the end of October, much to the deep disappointment of many people, in the meantime, I have written a letter that I have sent to my AM at The Senedd. it is not about Shalom but more about the NHS and the lack of, provision of care. for Parkinson's patients in my health authority. I'm attaching, below, a copy that I have redacted for anonymity purposes.

Dear AM 

I write with concern over the situation in X regarding the treatment and facilities available for patients diagnosed with the neurological condition of Parkinson's.

Globally, Parkinson's is one of the fastest growing yet most underfunded and least understood of medical conditions we are faced with today. I understand there are in the region of 500 people in X alone suffering with this horrendous medical condition, myself included, yet the treatment we receive in the county is wholly inadequate on every level.

Parkinson's is very difficult to diagnose, partly because there is no single definitive test that can be given, and partly because the symptoms that manifest are easily confused and mistaken for other medical conditions.  By the time sufficient symptoms manifest to give a diagnosis, the patient may well have had Parkinson’s for several years. Treatment is variable and at times feels experimental.  There is very much a postcode lottery in existence for treatment.

My personal story is that I developed an early indication of the condition in 2015, by way of a frozen shoulder.  I did not develop the usual associated tremor until 2018 by which time I was aware that I was becoming slow in my movement but put it down to exhaustion from being a full-time, sole carer for my late mother who had Alzheimer's. She passed away just before the pandemic, and the arrival of the pandemic was the reason I did not receive my diagnosis until September 2021. Since my diagnosis the care and treatment I have received has been wholly inadequate and falls short of what I was told I should expect.

According to the Parkinson's Society, patients with a diagnosis should be seen every six months by a neurologist, and in between those appointments should have the support of a Parkinson's nurse who will liaise between the patient and various members of the medical provision team, for example the neurologist, physiotherapists, and so on.

My initial appointment was September 2021. I have been seen sporadically at X by Dr X. He is competent, but he is not a neurologist. His title is General Practitioner for the Care of the Elderly and Infirm.  After a series of postponed and rescheduled appointments it has now been 27 months since I was last seen by him in September 2023. To say this is unsatisfactory is an understatement, and while I cannot speak for other patients, I think it is safe to say that I am not the only one experiencing these delays locally.

I have joined two online forums exclusively for patients, their families and care providers and I am learning a lot about the postcode lottery that exists within the United Kingdom.  A recent thread on one forum revealed that there is a qualified neurologist consultant at X*Hospital and they hold a regular clinic at X **hospital.  I have also recently learned that there is now a second part time Parkinson's nurse based at *** X   

Why can’t this neurological consultant come to X, ***or we be sent to X ?**

{* = a hospital 70 miles away)

{** = a hospital 90 miles away}

{*** = local hospital}

I live alone and have no immediate family who can help me and it has taken me in the region of four years to secure a County Council care package through Direct Payments due to, in part, my folder going missing during a turnover of staff.  My care package finally started in May of this year. I realise that the differences with the council are under a different authority to the hospital however they do contribute to the overall picture.

Ultimately, Mr X, the shortcomings in the treatment of Parkinson’s patients in Xis inexcusable and I would urge you to investigate this situation as a matter of urgency especially given the official predictions for the level at which this condition is going to increase in the next 25 years.

I look forward to the opportunity to discuss this further with you.

Thank you for your time.

Yours etc.

I hope it is saying what I want it to say, coherently and intelligently!  I won't hold my breath on getting a result, but hey, who knows?

In the meantime, I plod on.

Debbie xx