Warning this is long but I hope not too boring. If you make it to the end hats off to you but I won’t take offence if you give up on it. To be clear this is my personal view it doesn’t have to be yours.
This thread began because of the issue of prescription charges and understandably has broadened out into a much wider debate on all sorts of issues connected with living with Parkinson’s here and now, today in 2021. It is my personal view that the unequal playing field across many chronic conditions is that health and social care services have evolved piecemeal as different elements have come to the fore and so we have ended up with in effect, a patchwork service. Change only really begins to happen when issues become a political hot potato, cancer care, notably breast cancer care being a case in point. Currently it is social care… Parkinson’s although better than it was, still does not feature very highly in political circles, nor indeed do many other neurological conditions. Whilst research is of course important and valuable work is being done, we should all be shouting - campaigning - with a much louder voice to get not only the services we need without jumping through a million hoops usually judged by people with little understanding of the condition but also to get equality of services across the country.
The disparity between the quality and availability of health services is simply horrific. Even a cursory glance at some of the posts to the forum will show how bad it is, People who can’t make contact with their consultant or indeed, don’t even know who their consultant is. People who haven’t been reviewed in two years - way outside the NICE guidelines of every six months - and who have no access to specialist nurses. People left in limbo not knowing what to do or where to turn often at a time when feeling scared and vulnerable, just to name a very few examples. To my mind, this basic inequality is every bit as significant and important as the current debate on social care.
The fact that Parkinson’s continues to be poorly understood does not help the debate nor help move it up the political agenda. One of the reasons for this is the complexity of the condition which although will probably have similar symptoms amongst a number of us living with the condition, the impact and effect of those symptoms can and often is vastly different between individuals. Another reason is that all too often it is difficult to make your voice heard. To briefly use my own two very different experiences of hospital admissions as an example.
First I was admitted to a specialist London Hospital for a shunt to be fitted. I was able to self medicate and my surgery was scheduled to cause as little disruption to my medication cycle as possible. I was assisted in my personal care as I had explained it to them. Happy days. More recently I developed an infection and was admitted to a local hospital for what should have been 2 or 3 days as I had become dehydrated and fatigued. I was told I could not self medicate although I was quite capable of so doing (I later found this was not correct) my medication went totally awry because it did not match the standard round times and I kept bring told to wait. Result I went totally off my feet was an inpatient for 2 weeks and needed 3 weeks rehab before I was able to return home. It was an absolutely horrendous experience and I was made to feel by some, not all of the nursing staff, that I was a nuisance, a difficult patient because I kept speaking up and badgering them when my meds were due and, worst of all a liar. They clearly did not believe it when I said I lived alone with minimal help because that was not the person they saw nor did they see it was their actions that had caused my problems. I am only two well aware that my second experience is much more common than my first. I think it demonstrates however just how far away we are from getting the condition better understood.
Even if great strides were suddenly made in resolving the issues of understanding the condition, equality of services for all people with Parkinson’s and indeed equality with other neurological conditions, I am of the view that there is another element that statutory services will probably always struggle to fill and that is our need for flexibility to meet the fluctuating nature of Parkinson’s On the one hand I accept that resources are limited and there needs to be a way of fairly distributing that which is available. On the other hand however, the criteria used is all too often a blunt instrument which doesn’t allow for the flexibility managing Parkinson’s well demands.
Sadly I can’t offer any useful ideas as to the best way to start to unravel this very large muddle. Yes we can argue against prescription charges, poor quality services, lack of understanding even amongst professionals and dozens of other issues. As far as I am concerned many of the difficulties we encounter with a whole range of statutory services is precisely because each looks at a little bit when almost everything is inter-related to some extent or another.
Yes research is important and there may well be medication or other developments that improve the lives of those of us living with Parkinson’s. That would be wonderful. The other side of the coin however, the muddled, inconsistent and yes, unfair systems with which we also have to live cannot be ignored. Nor can bits be seen in isolation, It is a complex condition, needing complex and flexible services. In my opinion, it needs an holistic approach to review.
As things stand that is highly unlikely so I guess all we can do is carry on challenging, individually and together wherever and whenever an opportunity comes our way. A small victory is, after all better than none.