Lobby group?

Dear All,

I know this isn't a new sentiment, and I'm sure there's been previous discussion (though I can't currently find it) but I've been thinking a lot today about how can I change the plight of patients with pHPT.

There's a lot of pHPT info on the web - many of us made a diagnosis that way - so what's the problem with the medical profession? Lack of awareness? Resistance to change? Ignorance? Arrogance? From personal experience, I know it's not enough to show them all the research papers and graphs during your appointment which makes me think I need to attack the problem from a different angle, maybe at a higher level. Maybe a patients lobbying group would hold more sway than us each individually fighting our corner.

I was wondering whether any others would be up for brainstorming ideas with me about how we could do this? I'm keen and can offer some skills - I'm great at creative ideas, work in communication and design and I have links into the academic and scientific research communities. On the down side, I'm poor at admin and somewhat flaky what with my random brain fog, fatigue, lack of concentration, lack of planning ability pHPT addled head. 

But I kinda figure several pHPT addled head are better than one.


So, anyone interested? Any skills/strengths you can offer? 
Who's supportive of the idea but can't commit to due health/other commitments but will cheer us on from the sidelines nevertheless?


Dee


P.s. Also, if anyone knows of previous or existing efforts to do something like this let me know. I don't wish to reinvent any wheels or tread on any toes.

Hi Dee

Yes, I'm up for all of this and your links to the scientific and academic communities will be invaluable.
Where are you located by the way? I'm in south Suffolk near Colchester.

I just need to get my treatment plan on the road and then I'll have the energy and brain-space to join you in your efforts - defo count me in.

Love Tigerlily xx

Hi Dee

Sadly you/we would be wasting our time and energy as it will go nowhere. Thyroid patients have been trying to do the same for years and years, various groups have got as far as Parliament and hit a brick wall, everything is rejected as the Government relies on the medical experts who are responsible for the current situation.

There are many thousands more thyroid patients than pth patients and the diagnosis and treatment is actually far worse but the medical profession will not change their ways.

So nice idea and sorry to pour cold water on it but we don't stand a chance of changing how it is.

Nelly

Hi Nelly,

No worries about pouring cold water on it. I already know that it is a ridiculous and daunting task....but I still feel better about trying to do something...even if change is painfully slow I still like to think that in 20yrs, 50yrs, 70yrs time things could be different.

My background is in science communication so I regularly face the challenge of trying to shift people's very obsinate misconceptions.

Good thing I like challenges eh?

Tigerlily - I'm in South Wales but regularly travel to London for work, and Cambridge to visit family. 

Dee

Hyperparathyroidism is not treatable by drugs - therefore no drug company interest - therefore no interest. (sadly)

Thanks, Dee - I'm still up for doing something and Cambridge is not too far from here.

In the end I feel that it's not about just myself (no matter how me-me I might sound when posting!).

I know I've said this before on the forum but the problem for me is that I can (on good days) be my own advocate, even though it hasn't got me too far up till now. But what about the little old lady down the road with all the same symptoms, no access to the internet, no family to help her get diagnosed, and a GP who (through ignorance of the disorder) can only think to treat the symptoms.

I remember saying to my husband once, when I'm done with all of this and the bug-er has been taken out, I shall do some sort of Powerpoint presentation (how quaintly old-fashioned is that thought now!) and travel round the country showing it to all GP practices. I think it is at the GP level that we could make a difference.

At the endo level we come against The Citadel (remember Dr Finlay?? No? Ooops -showing my age now!) - the medical ivory tower that doesn't want the little old patient to be in any way included in their own healthcare, because traditionally they knew nothing about it and were happy to hand over the responsibility for it to the medical establishment.

But hey, here come the baby boomers! The NHS will have to change to accommodate our views and the way in which we do wish to be involved - not just for our own sake, but that of all others as well.

So, it's a sound plan, Dee. See what others on here feel for a while and I'll see what else I can come up with.

Peter has just mentioned to me that our local MP will probably not get elected at the next election so is probably looking for a cause to carry under his arm whilst sidling off into the sunset of political obscurity. He might just be our man in all of this, certainly in this locality. And if he were to be able to give the cause some limelight soon, it would come hard of the heels of Jasmine's newspaper article in the Derby paper about the woman who had the mystery illness of pHPT and felt so much better after the cause was found. It could all be happening at just the right time.

Love Tigerlily xx

ThyroidUK is a very big NHS approved charity support group, they have submitted several petitions and have got nowhere. The latest one is for better treatment options.

A petition requires 10,000 signatures to get a possible response (unlikely) and 100,000 to possibly be debated in the House of Commons (unlikely). So far TUK has only managed 4,291 signatures so you can see what a mammoth dare I say impossible task it would be to get enough signatures for a pth petition.

TUK are debating sending out a booklet about thyroid disease to all GPs and Endos but it won't change anything even if they do read it as it goes against their training.

The trouble lies at the top of the tree with Government advisers and until an enlightened Endo is appointed nothing will change.

Nelly

Hi Nelly and Everyone

ThyroidUK were very helpful to me in my search for an hypothyroid diagnosis but maybe it's the fact that they are NHS-approved that is the stumbling block!

I think Dee may have some rather more creative tactics in mind in order to circumvent the usual route of a petition. When you are just a small group like us, you need to think out of the box.

Perhaps we'll see how this discussion goes for a while. We don't need to use the forum to get things started if others don't want this.

Has the facebook group tried anything to get the condition noticed, does anyone know?

Love Tigerlily xx

The process of lobbying and/or getting a meaningful petition will be time-consuming and have a low chance of success, as Nelly mentioned.

However, I believe that there could be another way.

We all know that national newspapers will jump-on to any bandwagon that they think will get them good publicity and increased sales.

What we need are one or two patient experience heart-rending "sob-stories" as examples of the way that HPTH patients are suffering.  We then try to get the attention of one of the daily broadsheet newspaper's health correspondents.

Once we have one of these on-board, the pressure for action will come from the newspaper campaign, which will create a lot more attention than our small, dispersed bunch of disgruntled patients could achieve on our own.

There will still need to have a small group of people who are prepared to be spokespersons on behalf of our HPTH Group.

Our group will need someone to compile a good selection of interesting patient stories - not too long, not too complicated and kept on-topic - so that there is something to follow-up the initial publicity.

The objective should be, in my opinion, to get a Government review of HPTH diagnosis and treatment that includes submissions from patients (who are currently ignored).

Edwin

Brilliant, Edwin - some good out-of-the-box ideas there!

Leverage, I think they call it.

Look out, Jeremy Hunt - you could be busy.

Tigerlily xx

How about an interview with Philip and Holly on ThisMorning and they could get their resident Dr Ranj to join in.

Take note I'm not volunteering to do it  

Nelly

More thoughts:

The important thing is to always present the group's objectives in a positive way.

This requires creativity, as there is so much negativity associate with the impact of inadequate diagnosis of HPTH, but the group cannot afford to come-across as a bunch of complainers.

Find ways to describe the impact of HPTH on sufferer's daily lives in such a way that the public can relate to this in their daily lives, in order to win sympathy.

Don't make things appear too complicated, or too long.  Remember that they will not see things from the same perspective as you and, also, that the media and public have very short attention spans when it comes to news.

Edwin

This is all great stuff.

Yes, I was thinking more along the lines of getting the patient stories out there rather than expending our, admittedly, low energy levels trying to sway political opinion. Perhaps lobby was the wrong choice of word. I think attitudual change in doctors is a key goal and maybe that is more effective peer to peer. So we do need to be recruiting those more enlightened practitioners to be actively involved and perhaps target Health professional conferences and CPD training.

Love old school Powerpoint Tigerlily! I'll get you a slot at all the science festivals round the UK if you like. We could have a launch with the Royal Institution - it's just round the corner from the Ritz too.

Collecting patient stories is duly noted and on the list of action points. Thanks Edwin.

Keep the thoughts coming,

Dee

I know when i see my Endo or should i say Endo Registrar, they never really ask how i am doing, how is this affecting me and i think i would want to know " why does it takes so long, to be told that you have a parathyroid problem" 
I just feel there is no help for parathyroid , most of us are still getting to the stage where we are told "you have a parathyroid problem" and because we are in between, no one care less. Yet we are living with all of this.

Best wishes
Lozza 

I'm a follower, definitely not a spokesperson! But I'm interested in this. I think that some GP surgeries don't keep up enough with new ideas and practices and am lucky that mine does. My GP is part time at the surgery, but he also does minor ops (mostly skin problems) plus some work at a local hospital and volunteers as a medic for Search and Rescue. He thought I had HPT and sent me to the Endo for confirmation. So not all GPs are ignorant, is what I'm trying to say. My Endo is very caring and believe it or not, has actually "fast tracked" me through the system. The problem is that the system is slooooow because there aren't as many parathyroidectomies being performed as there are more run-of-the-mill ops. So you have to wait anyway. My Endo is a locum who apparently runs around to different hospitals all over the South and appears to go missing in action, but he's only one man. What I'm saying here is that he's done all he can and has paved the way for me to have surgery. I'm being let down by the slow system (and to a certain extent, other medical conditions). 

It seems obvious that there should be some guidelines that most GPs and many Endos should actually follow, but many aren't keeping themselves up to date with new ideas and more modern treatments and are thus letting their patients down majorly. 

I hope that makes sense. I'm not sure that a newspaper or television campaign will do a lot of good personally. Philip Schofield has been appealing on behalf of the Tuberous Sclerosis Association in the UK since the 1990s, yet how many of you have heard of the disease (unless you remember me talking about it a while back)? I personally don't think you'll get very far unless you try and involve some of those celebrities who have had parathyroidectomies. It's the way, at least of this country that no one cares about anything for long unless a celebrity is involved. You can appeal to people and they'll be sympathetic for 5 minutes or a day or even a week, but their attention isn't caught for long enough before they move on, because what affects a small minority doesn't affect them. How many people know much about Cystic Fibrosis? There is a lack of research done in this country because no one is interested enough to care or help provide funds or generate interest. Most research is done in the States because that's where the money is. You can't even get free prescriptions for the huge amount of medication you need every month if you have CF. My friend has 2 girls with CF, the eldest of whom is 16 and is thought by the hospital to be half way through her life. Campaigns to get the government to recognise CF as a prescription free disease in England, or even a disease worth funding are met with the fact that it is too rare. Only researched diseases get that recognition. 

Sorry I've got on my bitter high horse there and have had a rant. I just want you all to be prepared for closed doors and notoriety that fades. Sorry.! I'll still be there in support mode for you all!! 

Love and hopes
Brigitte xx

Hi Dee - the Royal Institution is quite quaint too, isn't it? Shades of all those other medical trailblazers who were there in the past trying to convince the establishment of their discoveries - I expect they too all consoled themselves at The Ritz afterwards in latter years!!

I think a subversive manoeuvre with our own GP's is one part of the answer. They will be the first to spot the signs of pHPT when they've learned what patients are presenting with today (the vague unspecific symptoms listed so well on www.parathyroid.com) (and the more obvious imbalance in blood test levels of perhaps only mildly raised calcium but with an inappropriately also raised PTH - SIMPLES!) rather than the overt osteoporosis et al that used to be the presenting symptoms to be seen first previously.

And then we need to re-educate the endo's - because what they have been taught by their teachers is not how things are happening today. I already have this in hand with the Addenbrookes' registrar I shall be seeing tomorrow. Poor child. I have a thick file of stuff ready for her to take away - pages marked up specifically in connection with my own case which demonstrates that the low Vit D is an associated factor in pHPT but not the bloomin' cause!! She will also receive a signed copy of the US scan of my 2cm adenoma - and thick ear as well if my husband has anything to do with it!

Keep collecting views and ideas, Dee - I'm with you on this - as I think I said before, could be our life's work (all of us).

Love from Tigerlily xx

PS Lozza - you have some really good input to make on how things are at your local hospital - what you have told me about clinics being full and how people are just being put off for another 12 weeks when the consultant doesn't show is crucial, or about those transferred to other inappropriate clinics/registrars.

Take care there with your B12 tablets instead of injections - Love Tigerlily xx