Very little support


#1

Hi everyone. I'm a new member of the forum. My Mum has PD. She was diagnosed 5 years ago and I'm happy to say the progression of the illness has been very minimal thanks largely I think to the fact that it was recognised and she was able to start treatment very early after the onset. I'm less happy with the fact that there is so little support from the NHS in our area. Her Consultant is very good but he actually came out of retirement as there was no-one to replace him and my Mum only gets to see him once a year if she is lucky. She was supposed to have a specialist nurse but she has only seen her once in five years and the last we heard she too had moved on without being replaced. Is this a common experience among other members? I feel particularly angry about this as I worked for the NHS for many years and I feel it is very much under attack from the present government. Is this lack of resources a recent phenomenon or has it always been thus? What other sources of support are out there?


#2

Hi Blueboypad71,

Welcome to the forum!

The forum is a place for help, support and conversations for those that are affected by Parkinson’s so you’re in good company here.

I am pleased to hear that your mother is doing well and that she has had a positive experience with her consultant so far. As you probably know, having a specialist nurse makes all the difference to people with Parkinson’s and if you or your mother contact our helpline with any medical concerns, one of nurses will get in touch with you within 24 hours. In addition to this, we offer a range of services and information on our website that you may want to explore here.

I hope you find the above information useful and do let me know if have any more questions.

Many thanks,
Reah


#3

Hi,
I really hope you are feeling a little better, I have used the PDUK nurse services and benefited from talking with a local PDUK support worker. I do understand that having a consultant, movement disorder specialist , PD nurse are really important to have. Just an idea but is it possible to transfer to a neighbouring hospital to get the support you deserve/need?
I have just changed areas to find the support I needed but know this may not be a good suggestion for everyone.

The services provided seem to vary from area to area, dependant on budget, priorities etc. Even if you are just offloading to ease the stress there are many of us
on this forum who will be able to understand how hard this must be for you.
Fingers crossed new trained staff will be with you soon. X

Take Care x


#4

Hi Tee Hee & Reah

Many thanks for your replies. We will try contacting the PDUK nurses. Much obliged. It's nice to know there are supportive people out there who are listening.


#5

Hi,

Unfortunatey, from the experience with my father, the NHS support system is almost non-existent, at least here.

He sees the consultant if I stamp my feet for a refferal from the GP although it's never the same consultant and often we end up going over old ground as notes seem to disappear. Apart from that the hospital Parkinon's nurse comes out every 6 month but offers little in the way of help - just leaflets, a weight check/blood pressure test, and an Advanced Planning form to complete for any paramedics saying whether Dad would like to resucitated or not. Most queestions are answered with "That's the Parkinson's". I think they're oversubscribed but also the role seems badly thought out. It's practical advice, but little in emotional support which I consider vital after a diagnosis.

We get better support from a Advanced Community Practitioner - a senior community nurse who vists every couple of weeks to do a full MOT on Dad and helps me navigate through the system to get help.

The very best help we're getting is from the local co-ordinators from here - Parkinson's UK. They've been really proactive and trying to organise things like speech therapy, emotional support, and befrienders, etc.

Whatever the problem is with the system, we're shortly going to see a private neuroconsultant to double-check we're doing everything for Dad. It's ÂŁ250 for a consultation - not bad going really to have a thorough checkup with a Q&A. That's the cost of a car service or a posh telly...

Keep battling and use your eyes and ears to piece all the information together.

All the best x


#6

Hi Blueboypad71 - I have been on this forum for a number of years and have read many posts with the concerns that you have about the resources available to with your Mum. There seems to be problems in some areas and not in others. I don't know the reason for this, but it must be so frustrating. As far as I know Leicestershire and Warwickshire seem to be ok, and if anyone out there reading this post can let you know of the resources available in there particular area, then we may come up with somewhere near to where you live for help. Be it for PD nurses, Neurologists etc., PD support worker. If it's any consolation I only see my Neurologist every12 month which I think is about the norm, my PD nurse I see every 6 month on average.
Here's hoping you get sorted with some help, and as the moderator said (Reah) you can always contact them on the phone line given at the top of the page. Good luck - Sheila


#7

Hi Hal,

Welcome to the forum!

I’m sorry to hear that your father hasn’t had the best experience with the NHS, however, it’s great to hear such great feedback about Parkinson’s UK has been.

We hope you find the forum useful and engaging.

Many thanks,
Reah


#8

Thank you Sheila

It’s really good to have so many responses from people who really know what they are talking about.


#9

Thanks Hal

Not had so much useful feedback since my Mum received the diagnosis. It’s good to know there are others out there who are facing the same problems and finding solutions. All the best.


#10

Hi blueboypad71,

I realise I didn’t answer your question on the state of the NHS. Sorry - long reply here. According to various family members and friends who work in the NHS as clinicians, the NHS needs an overhaul to meet the requirements of the modern age. By overhaul they mean better controls of how/where money is spent, not just pumping in more money into a leaky ship.

A hospital pharmacist friend says at points they are incinerating £100,000 worth of mis-prescribed/over-prescribed medication each week. E.g. The patient may be prescribed a large amount on one ward, then is moved, and another doctor changes the medication, prescribes a load more, and the surplus is incinerated as it can’t be returned to stock as you cannot track the batch numbers of loss medication. That’s just one hospital in one area.

Also the local health care systems don’t connect up. The Advanced Community Practitioner (ACP), a nurse practitioner who co-ordinates the medical help for my parents, doesn’t receive e-notifications if a District Nurse (a separate team) visits them. Instead she has to manually log into each patient record to check for any updates or visits by other teams. E.g. ACP visits and notes skin changes that might be bed sores but after periodical examination is happy it’s healing. The carers then see the skin blemish and have to automatically alert District Nurses. The DNs then visit separately and may decide a different plan of action. The ACP has no idea of this unless checking each patient record, even then the record may show a DN visit but no details.

OR when the hospital consultant examines my Dad and writes to GP after the appointment, in theory the ACP should receive a copy for her records and keep her in the picture. But it hasn’t happened ever in 7 years of treatment. Instead, I have to scan the consultant’s letter sent to my Dad and email it to the ACP. (Nevermind the lack of security sending by email).

OR the ACP collects the flu jabs phials from the GP dispensary en route to administer them to my parents. ACP tells GP staff this for their records as part of annual flu programme. Just as ACP was leaving my parents’ house the GP surgery rang the house to book a home visit by DN for a flu jab. If my father had answered and agreed they both would have had double flu jabs.

This type of thing must be happening every day all over the country.

Personally, I don’t think the NHS can be fixed without a huge grassroots overhaul with improved integration of services and systems. That’s not something any political party will do as it’ll incur difficult times for the public and anything unpopular loses votes.

Perhaps it’s time to take the NHS out of politicians’ hands and make it an independent body transparent unaffected by party political whims that can change every 5 years. In my experience, no Govt of any party has improved the NHS.

Phew!!! I’ll have a lie down now LOL.


#11

Hi Hal

You’re absolutely right on a number of points. I worked for the NHS for over 10 years and it’s so frustrating for practitioners that most of the important decisions are made by people with no clinical experience whatsoever. The NHS is far too top-heavy with managers who are concerned about the bottom line and keeping up appearances rather than effective patient care. Whilst the really big funding decisions are made by politicians who think in terms of 5-year cycles rather than in terms of long-term sustainability.

The current shower of course are hell-bent on privatising the NHS and are doing it in a real sneaky way by starving it on money and allowing services to fail so they can bring in their private sector chums like Richard Branson. It’s no better here in Wales because Westminster are reducing the block grant to the Welsh Government. It’s very, very depressing for me because I really believe in the NHS being public, available to all and free. I suppose I’m just an old-fashioned Socialist!

You’re obviously right though on the appalling mismanagement and disorganised, uncoordinated state of services. Again though, if clinicians were allowed to organise things they would do a much better job! For example, so much money is wasted on giving contracts to IT Consultants which never actually deliver. Don’t even get me started on PFI!

Thanks for your thoughtful and provocative responses. It’s so refreshing to talk to others in a similar position. Kind regards.

Paddy


#12

Hi my name is anne ,and i am supporting a very dear friend and his Family. We are so frustrated with NHS.As we receive little or no help Brian is the late stages of Parkinson .The situation is progressively taking its toll that is affecting the rest of the familyone of his Daughters is suffering from depression,and feels that she cannot carry on,as his care now has changed to constant care…I would like some advice on how i can support the Family throughout this disease. Thank you Anne


#13

Hi @redtango,

Sorry to hear about your friend and the impact Parkinson’s is having on him and his family. It’s great that you are trying to support them.

It would probably benefit you all to contact the specialists on our Helpline for advice and information about support. You can call them on 0808 800 0303 and they will also be happy to just chat if that helps at all.

Best wishes,
Edwina
Moderation Team