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Old 23-08-14, 01:38 AM   #1
Allan
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Default The Political Bandaid - or is it?

Over 4 years ago many people from this Message Board had a day out in London. It is well documented elsewhere but this is the gist of it:

"To promote greater understanding and awareness of Huntington's disease, an All Party Parliamentary Group is being formed, under the chairmanship of Lord Walton of Detchant ......"

These papers were published at the same time:

Huntington's Disease greatly underestimated in the UK

http://www.lshtm.ac.uk/pressoffice/p....rWNlqrax.dpuf

Uncovering the true prevalence of Huntington’s disease

http://www.hdfoundation.org/PDF/the_...ra_spinney.pdf

and contains this:

Cath Stanley, who runs the Huntington’s Disease Association’s care services for England and Wales, says there is likely to be a feedback effect if the higher prevalence figures are confirmed: knowing their condition is more common than they thought might encourage more patients to come forward. Armed with the new figures, the charity plans to campaign for more National Health Service (NHS) resources to be allocated to Huntington’s disease, on the principle that the NHS guarantees equality of treatment to all, and patients with Huntington’s disease are being underserved because of the underestimated prevalence. The quality of care that is currently on offer is patchy, says Stanley: “If you have a specialist, multidisciplinary Huntington’s disease clinic in your area, you probably get very good medical care”, she says. ”If you don’t, that might not be the case.”

This covers much of what is being hotly debated and eloquently stated in recent threads and posts.

So, what progress has been made in 4 long years? Anyone know?
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Old 23-08-14, 10:46 AM   #2
flobert
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Default Re: The Political Bandaid - or is it?

Hi there,

I agree that the underlying issue with the "system" is the lack of HD specialist centres of expertise or hubs, which co-ordinate and direct other services. my experiences with Meg are that;

1. there is no understanding of the disease, its progression, and anticipation of the symptoms,
2. there is no co-ordination in the responses,
3. there is no on-going assessment aimed at managing symptoms as they emerge instead of allowing them to become crises.

The people at Meg's DMT meeting on Wednesday were all finding their way and clearly for most of us this was simply new ground. I am really lucky in having the support of a good RCA, who will also go to the next meeting, but it's almost as though you want someone like the RCA, with the "big picture" know-how across all the disciplines (clinical, social, community health) and the disease expertise to be calling the shots.

Big society role for the HDA?

Anyway, as a related link, and a very useful and enlightened piece of research, I've attached something I found while searching the inter-web last night. This is the sort of study that backs up we all know from personal experience. It's work like this that really needs to be put under decision makers noses.

http://apt.rcpsych.org/content/16/3/168.full

flobert
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Old 23-08-14, 12:13 PM   #3
Allan
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Default Re: The Political Bandaid - or is it?

Quote:
Originally Posted by flobert View Post
Anyway, as a related link, and a very useful and enlightened piece of research, I've attached something I found while searching the inter-web last night. This is the sort of study that backs up we all know from personal experience. It's work like this that really needs to be put under decision makers noses.

http://apt.rcpsych.org/content/16/3/168.full

flobert
Hi F

I posted this same weblink a while ago for CC. It is so frustrating that there isn't an easy way to have a library of hd symptom-related web links into which we could just drop our own web research discoveries.

We have been hoping that some bright spark might be able to help us with this and other technical dilemmas. No takers as yet.

I suppose if we just started a "Virtual Library" thread we could deposit relevant books and documents, medical papers and weblinks there.

Or, maybe the website admin people could combine the Juvenile HD and Young People categories and install a Virtual Library category where we could create our own threads such as the headings below:

1. Movement\Chorea issues & Physiotherapy
2. Cognitive\Memory\Dementia issues
3. Behavioural stuff
4. Psychiatry\Psychology\Mental Health issues
5. Genetic testing\Risk\Future Families
6. Medication and Treatment issues
7. Legal and Employment issues
8. Nutrition and Food related issues
9. Practical advice and Tips\Care

Any other suggestions out there? Let’s see how it goes ………..
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Old 23-08-14, 02:20 PM   #4
Allan
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Default Re: The Political Bandaid - or is it?

Are you just up for a wordy argument, a verbal battle, Jacqueline – or what?

I’m just giving newcomers an overall view of what the recent past promised from a political standpoint – plus the 2010 views of the HDA Chief Executive.

It’s also “my way” of letting off steam [hopefully in a reasonably constructive way] because we know, in reality, that the research isn’t going to provide a solution next week or next year. There aren’t enough mice to go round!

Not everyone responds to every posted message. We are all individuals searching for meaningful solutions within this “random” framework and network of similar souls.

End of ………
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Old 23-08-14, 04:36 PM   #5
Joseharry
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Default Re: The Political Bandaid - or is it?

Hi all,
I think the virtual library is a great idea guys.
If one of us comes across a useful reference why not pop it into the library for others to share without the need for them to do their own research.
Right now I wish there was an article written in laymans terms that I could post for the members discussing "planning a Family".I Just dont have the time to do the research myself and would hate to post misleading , incorrect or inappropriate material, so its a great big yes please from me for a virtual library!
Thankyou,
Brenda
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Old 23-08-14, 05:52 PM   #6
dennisw
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Default Re: The Political Bandaid - or is it?

The first research from the APPG on HD did confirm a higher prevalence than previously thought. Though in all honesty I have not seen anything of significance since from this group.

Regarding the headings Allan listed, this week we had a care review for J, first for a long time. Lead by a assessor from the local Mental Health Trust and attended by an Adult Social Worker from the County Counsel, lead nurse of his unit and nurse assessor for the service provider.
In anticipation I printed of the GP guide, Nursing guide and New Mental Health guide. Had a quick refresher look and can confirm most of what Allan listed features between the 3 documents.

The meeting was called to consider whether J should have funding changed from Section 117 Mental Health Funding to NHS Continuing Care as his symptoms are more physical than behavioural. Stated no question of reducing just coming from correct pot. Also if he may be better on a nursing unit in the same building.

The two Social Worker types were quite open about their limited knowledge about HD, and the Mental Health one, who was leading started talking about his drugs and their influence on his care. I suggested she should talk to his HD consultant and she immediately agreed adjourning the meeting until she had done so.

I then produced the three documents I had printed of and she asked for a look at them. Then all four of them were trying to look at the same time, including the nursing home staff. In the end the assessor from the home went off and printed a copy for each of them.

Will have to see how things develop, but for a change from experiences on the MB those in a position of making decisions were willing to take advice and read up on the condition.

Just goes to show how inconsistent care is across the Country and as said before a post code lottery.

Dennis
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Old 23-08-14, 10:04 PM   #7
flobert
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Default Re: The Political Bandaid - or is it?

Hi there,

The point I was trying to make in the reference to "a big society role for the HDA" is that the HDA have clearly identified the need for the co-ordinator position. Ok its a small, poorly funded charity, its doesn't seem to carry a lot of clout, and this is meant with the best will in the world toward everyone who works for them (and I do myself at a branch level). This MB is chock-a-bloc full of stories of disjointed and misguided "care". Managing something as complicated as HD really needs a specialist to co-ordinate all the other services which are blunt instruments. An RCA COULD DO THIS.

So in an ideal world maybe the NHS would give several £m a year to the HDA, bulk up the RCA network (i.e. more trained RCA's with admin support) and give them some sort of legal authority in MDT meetings to direct the care plan. By this I mean give them real authority to direct things. Most health/social professionals would probably welcome this themselves if asked.

Fantasy - maybe, but Cameron has often talked about charities sometimes being the best placed provider of services.

Regarding the web link, 4 years for an academic paper is nothing. Every psychiatrist, GP, CPN and social worker in the land who has an HD patient should be made to read it. Unfortunately mugs like us can bang on about what needs to happen/how the system needs to change all we like; those in authority, i.e. with the power to change things will only listen to "experts" at the end of the day. We can say to ourselves all we like that the "academics" don't get it, that they don't know what it's really like, but we will never get anywhere in improving the "system" without their backing.

If grates, tough, that's the way the world works and if we want to change and improve things we have to get smart and play the game to these rules.

flobert
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Old 05-09-14, 11:57 AM   #8
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Default Re: The Political Bandaid - or is it?

Hi all

After reading this thread, I wanted to give a brief update on the APPG:
In 2013 the HDA took over the secretariat of the group, this basically means that we organise the meetings and strive to keep the group running.
We will have our AGM in October, we will be presenting information we have gathered about where specialist clinics are available, and where specialist nurses are available. In addition we are currently looking at cases where 'Continuing Healthcare Funding' has been taken away from people with HD who were previously in receipt of it. We are working with a number of care homes to look into this in greater depth.

In November we are joining with a other rare disease APPG's to hold an APPG summit. The summit has been organised by Rare Disease UK, the summit will look mark the one year anniversary of the launch of the UK Strategy for Rare Diseases https://www.gov.uk/government/upload...e_Diseases.pdf and be an opportunity for MP's to meet with key stakeholders.

I hope this gives some insight into the work were are trying to do through the APPG.

Best wishes

Ruth
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Old 05-09-14, 07:43 PM   #9
Allan
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Default Re: The Political Bandaid - or is it?

Hi Ruth

Brilliant. Thanks a lot for that. It's often difficult to know who to approach or where to look online for current info on all things hd.

Your message content of:
  1. Specialist Clinics
  2. Specialist Nurses
  3. Continuing Healthcare Funding
  4. Working with Care Homes
  5. Linking with Rare Diseases UK

is all very interesting and will give great heart to everyone using this message board.

Thanks again

Allan
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