UK: A damning report has highlighted severe inequalities in access to PD
 

Unequal access to Parkinson's services

A damning report has highlighted severe inequalities in access to Parkinson's services across the UK.

Thursday, 09 July 2009
http://new.u.tv/News/Inequalities-in...5-43d44168299e

The report says many sufferers face problems such as limited information, lack of respite for carers, and poor access to expert nursing and therapy.

The report - Please Mind The Gap - shows that NICE [National Institute for Clinical Excellence] guidelines on Parkinson's disease are not being followed, despite potential savings of nearly £3m for the NHS.


'Please mind the gap: Parkinson's disease services today'

http://www.parkinsons.org.uk/about_u...pg_report.aspx

The All Party Parliamentary Group for Parkinson's disease (APPG) has published a report in July 2009 into access to health and social care services for people affected by Parkinson's disease.

'Please mind the gap' report coverThe report - Please mind the gap: Parkinson's disease services today (PDF, 1.3MB) - reveals major inequalities in access to information and services for people with Parkinson's and their families.

The report is the result of a parliamentary Inquiry which has run since November 2008.

Over 360 people with Parkinson's, their carers, individual health and social care professionals and organisations helped shape the report by submitting written evidence

Can anyone from the UK explain this? Specifically if or how it is a result of socialized medicine? I admit I didn't read yet; it would be much appreciated if someone could explain. Having enough challenge trying to follow the changes and what they could mean here. Could we be headed for anything like this?

thanks,
paula

Services for people with PD in the UK are primarily affected by location, which also affects anyone with a disease/condition that is less well known or cannot be provided for locally. Specifically for PD sufferers that can mean limited or no access to PD nurses, and/or no referral to a neurologist, especially with elderly people. Some PD nurses are funded by the Parkinsons Disease Sociiety and they are a much valued part of the PD care team. As the majority of centres of excellence in medicine are in highly urbanised areas there are many rural areas that miss out on key services that would be seen as essential elsewhere. In recent years there has been a move towards more centralised services, leaving rural areas without the same kind of coverage. Some of the other things that come into this are occupational therapy, who also deal with disability needs in the home, physiotherapy, care services, and respite care for people whose carers need a break/assistance.

In practice this means very patchy services, with the South being better served than the North, and different provision strategies in Wales and Scotland. Historically services have followed this pattern, and this has to some extent been exacerbated by political will (centralisation, cost cutting exercises, etc) and changes in the rural population. It is a complex issue, and frankly those who shout loudest (urban city areas) get the most. In principle socialised medicine is very beneficial, but like all things someone or another comes at the bottom of the heap, i.e. smaller and more isolated populations. I guess that is probably true no matter what the means of delivering health care happen to be.

Rural
 

We live in a rural part of the U.K and apart from the fact that John's neurologist has to travel to our area on a monthly basis to see patients we are lucky in that we have a specialist P.D nurse. I think it is more to do with the way the U.K Health Service is funded. Travelling long distances, often on twisty roads, for specialist care and appointments is a problem in rural areas.
We have to remember that our Health Service,although most moan at it,is free at the point of delievery, so although provision is patchy nobody has poorer treatment because without they are of limited income. The care you receive in the NHS has nothing to do with income. Anyone can pay for private care by "going private." Often by going private you see the same consultant. If I had to have a major operation I would choose NHS over private even if I was a millionaire. The point is that this report is highlighting the fact that services, which are provided by a free Health Service are patchy.It is a good thing patchiness has been highlighted as now something might be done about bringing certain areas up to the standard of the best. I do not think that this patchiness in services provided by the NHS is unique to P.D.

I was "glad" to see this report ...
 

as for too long PD has been "pushed in the corner" especially in England.

For example:

i) Unlike the rest of the UK, in England we still have to pay for PD prescriptions.
ii) DBS (I believe) has still not been cleared as a treatment by NICE but is administered under the "experimental treatment" banner and budget.
iii) YOPD are treated as "second class disabled", certain benefits are just not available to us as they are for the over 60's.

I agree with ECD, we may moan about the NHS but I would take it every day of the week over a private healthcare system.

Funnily enough I too live in a rural area (Evesham, gateway to the Cotswolds don't you know and ideally placed for Shakespeare's birthplace, Stratford), however I have been very lucky with access to a fine Neuro. Also I am close to Frenchay, home of the GDNF trial. I agree things are probably best the further south you go.

Don't worry Paula, our NHS is so idiosyncratic that I am sure you are not headed down the same road. The principle of "cradle to grave" public funded healthcare is probably an anathema to the States, higher taxes, more state interference, limiting freedom of choice.

I leave you with a link to the villages of the Cotswolds, best villages in the world in my opinion.

http://www.cotswolds.info/cotswold-pictures.htm

Take care,
Neil.

How beautiful! Thank you Neil and for the info.

paula

I agree
 

Neil, that under 60s having to pay for presciptions for P.D in England, when other long term conditions get their presciptions totally free is not fair. Our daughter in law, for example, pays nothing for any of her prescriptions because she has hypothyroidism. I think we should,though, make it clear to our friends across the pond, that if we are eligible to pay a prescription cost we do not pay the full cost of the medication:there is a set fee that is paid whatever the cost of the medication.

Thank you for the info. As a family physician in Canada (and someone with YOPD) it's always interesting to hear about medical services in other parts of the world. The wait times here can be long no doubt, but at least universal healthcare is extended to everyone regardless of socioeconomic background. Unfortunately we too still have difficulty with physician recruitment in rural areas, but if you can travel, you can still be referred to the top physicians regardless of who you are. Not a perfect system but fair (ie. everybody has to wait ;)
Soania

discussion
 

There is an interesting discussion about funding in the U.K on the Parkinson's Disease Society Forum

yes we are headed for rationing etc. I saw the British PM on TV the otherday saying, " we have 30 years on you with socialized medicine, DON"T go down our road, a disaster awaits you!"
There are better ways to fix it than giving the federal government control of our health care. I do not feel especially predisposed to give the millions of illegal aliens health insurance in any event!