Chronic disease - you are your own doctor

It seems to me that as an organisation the NHS misunderstands the nature of Parkinson’s. The NHS is set up for short term intervention following an emergency and it does this well. Within emergency care the Doctor, who has years of training and experience, is dominant and the patient is passive.

A problem arises when this model of care is applied to chronic, incurable, progressive diseases such as Parkinson’s. Within chronic care the patient, who is likely a medical novice, becomes responsible for day to day treatment and the Doctor is relatively passive; the gap between a patient’s medical training and the burden of chronic care is troubling. Shockingly, I was offered no psychological support when I was diagnosed and I was left to the wilderness of the internet (whose content doesn’t have a conscience) to understand what was happening to me. Charities such as Parkinson’s UK do step into the breach but I wonder whether some sort of meeting with Doctors and other health professionals can be arranged a week after diagnosis where patients and their families are taught something of the disease, can ask questions and are set up with some of the tools needed to shoulder the burden of chronic care. Reading a leaflet or a web site, although useful, is a one way conversation.

I am very grateful for the input of my Physio and Occupational therapists (thank you Laura and Mairi!) but it seems I’ve used up my short term intervention tokens because this is gradually stopping. But, Parkinson’s is a shifting disease (new challenges will arise) so the short term intervention model is inappropriate. Also, given the chronic nature of Parkinson’s it will benefit both patient and health professional if a patient could see the same person each time; building trust is crucial in all medical interactions but especially dealing with chronic disease.

dr jonny

Hi Dr Jonny,

I think this conversation has been discussed many times and yes, you are right. It is not acceptable to be told you have a chronic, incurable, neurological disease which will affect every aspect of your life then say "Here are some pills, see you in 6 months"!!!

It is a shocking discovery to many, including me, that you have PD and after the initial shock has subsided there are just so many unanswered questions and no-one to answer them.

I made an appointment and went to the parkinson's nurse who didn't seem interested (didn't seem to understand why I wanted to see her). Consequently I haven't seen her since!!. I e-mail her if I have trouble with my meds and she talks to the Neuro for me, that is the extent of my contact.

I have a new Neuro who I like very much but who made another appointment 9 months away!!. Good in one respect as the progression of my disease seems fairly slow but I feel like I need more, He makes me feel supported when I see him but that feeing lessens over time and 9 months between appointments is too long.

As I was misdiagnosed for years, I came to terms with being told I had PD quickly, As I have really know for a long time but could not get anyone to listen to me, I now have 10 whole minutes a year with a Doctor at the hospital, this is someone different every year, they then write to my doctor to tell them what medication the are changing for them to give me, 8 weeks later, If I go to the Parkinsons Nurse to change anything its 12 weeks.So I now look into medication and go straight to the doctor missing the above. much quicker. I work in a factory at a machine hence I cannot go 12 weeks to sort out my dizziness etc. I have been told if the tablets make you dizzy dont use machinery but will the government pay my rent that week whilst im not at work Sickness pay does not even pay that so do I get evicted, No I pester the doctors. and will whilst I am able to.

Interesting topic. Having been diagnosed by my GP in a short consultation, no followup appointments and no referral to specialists I am well aware of the shortcomings of GP services in the NHS. This publication is about this subject. Many words, But the challenge is in the implementation.

Wow, what a shambles. Has anyone out there ever been given a Personal Care Plan, or even been told what the general care strategy is for his or her particular situation/condition? I certainly haven't.

I have to say i prefer the australian system - have to pay about 40 pounds but i can make an appointment anytime and am currently seeing her every 2 to 3 months. I can also change neuros though the nearest one is 100km away.

but in any system we have to look out for ourselves - no-one else cares quite as much or can spend as much time or knows what it feels like. Also we are the only one who attends all of our medical examinations and has a full picture of what is going on. It is up to us to be the final check on prescriptions and drug interactions. knowledge is strength.

ps i am having a personal care plan next week.

I must say that reading your posts increases my sympathy for all of you in the UK and my appreciation of the US system. Medicare and my supplemental insurance pay for my appointments with my PD doctor; in addition, Medicare covers my medication costs about half of each year. Admittedly, the costs the other six months are quite high; our pharmaceutical companies are still out of control.

When I was first diagnosed, I was told to call the doctor's office as often as I wished with any questions. I was informed of local support groups and given a huge folder full of information on PD. Because my case is not yet severe in symptoms, I see my doctor only twice a year, but he is always willing to spend as much time with me as I need for discussion, questions, fears, etc. It is terrible to hear what insensitivity some of you are dealing with.

J I guess you may be feeling about UK how i feel about US when i read people unable to afford meds or having to change the med they are on because their insurance tells them they will no longer pay for their current med. I may complain but i wouldn't want another system, for all its faults. I know a PD nurse who gives the sort of support and care you received but in both countries I suspect that standards vary geographically. I was not born here and so i feel doubly privileged to be a part of this system.
this is what I appreciate.
In UK my doctors visits are free, medication is part payment with a maximum about $150/year, those on low incomes are exempt from charges as are those over 60. Meds are generally readily available and it is the pharmacists responsibility to source them.

Doctors will home visit if a patient is too unwell though i think this is less common. If referred by general practitioner to allied health eg physio, occupational therapy, counselling or for scan, x ray etc they are free. Surgery is free (eg DBS) as is hospital care. Neuro appointments and any other specialist are free. Health aides eg crutches, are supplied free. I even got adaptation to my computer mouse supplied by OT. There is a parallel private system and the two interface eg to speed up a process or go to a particular specialist a patient may have a private appointment then transfer to the NHS system for the continuation of their care. This is quite acceptable.

I think it fair to say that though we might moan about it no one would want to loose the overall system of free or affordable healthcare for all. I will be interested to read if others agree and what they write.

what oi loike abaht thee ohzstrahlyen seesteem eez thet thez ah seeftee neet foh eevraywahn beet eets cohmbayned weeth persnahl servees ahn cohnsooma choice, wheech ees choice mate.

thu nhs is a grate institooshun, boot ye arr traeted lark cuttle tae soom extaynt.

thi ammeraykan saysteem is fahn as langh as yar eenshewrrance lehsts, howevah eef yah ees pooah yoos is in tha sheet, mahn.

Turnip: you Aussies blokes n sheilas got it sussed mate. Couldn''tve said it better meself.

to be serious for a mo, i do think the best system is a third way between pure capitalism and pure socialism. the totally free uk system results in unnessary patient activity and lack of choice, the totally paid for system results in unecessary provider activity and no treatment for the poor or unlucky.

May I say that the UK system is free at source not totally free as we pay for it as I understand in our National Health Insurance taken out of our wages at source. it could be better run. If smaller local hospital were still about it would be better than the mega Hospitals, that are such a maze. and perhaps doctors would stay longer and get to know their customers. I have seen about 7 different doctors in 3 years. some very nice. but I count myself lucky that I have medication, And know that some people do not. but it frustrates me that it take so much effort and time to access it. and running out of steam fast as this disease takes its toll. But thank you for giving me the chance to get it off my chest without thinking me to bad.

To Hikoi -- Thanks for your explanatory post. I feel much better now about the UK system. Judging by forum members' posts, its greatest weakness seems to be the doctors' attitudes. I think the greatest weaknesses in the US system are the manipulation of drug prices and the high cost of hospitalization. I am fortunate not to be in the bottom quarter of the population financially; being able to afford insurance is crucial before age 65. After that, Medicare covers most costs, and supplemental insurance for the remainder is inexpensive. The worst-case scenario is not qualifying for Medicare for some reason. For example, in some states, teachers do not pay into the Social Security pool, but into state retirement systems (no choice offered). Then at retirement they receive a pension but no health care! Retirees in other fields receive their pensions PLUS Social Security payments and Medicare coverage. I understand that in most states the situation has been remedied now by allowing optional deduction for Medicare. But that was not the case when I retired in California several years ago. Had I been single rather than married to a man who qualified for Social Security, I would not have Medicare coverage today. The US system is filled with inequities, I'm afraid. If you can get medical care, it is usually good; not everyone can get it (except for legally required emergency care).

Anyway ... to return to dr jonny’s original point.

I’m not so sure I’d agree that the NHS isn’t set up to deal with chronic condition. Certainly it has to deal with enough of them. But dr jonny has some useful ideas: I wonder how many are practised by PD nurses at the first appointment?

I think we have to decide how much of an “expert patient” we want to be in managing our own condition. I am amazed by the expertise shown by the posters here, not only in themselves but in the disease generally, and in the autonomy you show in, eg, tweaking your own meds.

Having just been signed off by my own neuro for the next year, I’m interested in the extent to which I can be useful to myself and to the medics (noting I saw somewhere that the average GP practice might have only 2-4 PwP on their books at any time, and that my PD nurse seems run off her feet) while a) not becoming obsessed with Me; and b) not appearing to the medics as a typical middle-class patient who thinks they know it all just coz they can Google some medical terms.

Any insights gratefully received.

best wishes


Very good points made here, Dr J.
For me it's been fifteen minutes with a neuro once a year, and the rest an occasional partnership between myself and my GP, in which I suspect that I may be the dominant partner. It could be much more satisfactory. Like you, I have a doctorate, and I know something about research, but I'm not a neurologist!

One of the brilliant things I got from being part of a drug trial was seeing a neurologist once a week. Such a great help in my first year of PD.