A sad goodbye

[Miriam Vered]

Dear All,

For nearly nine years I have been running the Support Forum, as part of the NAC Amyloidosis Awareness Programme. My father, Professor Sir Mark Pepys FRS, initiated the Programme when he was the Head of Medicine at the UCL Royal Free Campus and the Director of the Centre for Amyloidosis and Acute Phase Proteins. He founded the Centre in 1999 when he accepted the invitation to move to UCL with his whole team. At the same time, he established the NAC to encompass the clinical service for amyloidosis patients that he had created at the Hammersmith Hospital, starting in the 1970s when amyloidosis patients were first referred to him. After his invention of radiolabelled SAP scintigraphy in 1985, he developed the service into the de facto national referral centre for amyloidosis that was finally recognised and funded by the NHS as the NAC.

In addition to the patient support forum, the Amyloidosis Awareness Programme I created included the patient information website, NAC newsletters, the patient information sheets and the amyloidosis patient public involvement (PPI) organisation, the UK Amyloidosis Advisory Group (UKAAG).

There have been almost 4000 posts on this forum, by nearly 1300 forum members from all over the UK and other parts of the world. I very much hope that the forum has provided you all with help, support and a feeling of community over this time. I have personally administered the forum, moderated all posts and liaised closely with the NAC doctors to try to provide timely and reliable medical and logistical advice and assistance.

The current 3-year contract between the Royal Free Charity and Vered Consulting, the company through which I deliver the service, comes to an end on 30 August. Helen Lachmann, who has been the clinical lead for the NAC for the past couple of years, since the transfer of the Centre from UCL to the NHS, has notified me that the contract will not be renewed.

I have no information about whether the Programme or any aspects thereof will continue hereafter. This forum and the patient information website will go offline or become archive sites unless someone else keeps them running. I have, of course, provided all the necessary information required for their existence but the active engagement of someone with my knowledge and skills will be required to sustain their quality.

I know from the many favourable comments over the years that the Forum has been helpful and I am very grateful for all your positive and supportive feedback.
I wish you all well.

Kind regards,
Miriam

Dr Miriam Pepys Vered MB BS
Director, Vered Consulting Medical Communications


https://www.veredconsulting.com/

[Lesley]

Oh Miriam what sad news. I will so miss the forum. It has really helped so many people.
Just to be able to reach out to others who understand what you are going through, not to mention the valuable advice and information given.

You must have given so many hours in policing this and I am personally truly grateful.

I hope this is only au revoir!

Thank you so much for all that you have done

Hugs and love
Lesley
xx

[Marnie]

This is the saddest news! While generally not active on the forum I visit it frequently for information, advice and understanding of other Amyloidosis patient’s experiences.

The forum will be a major loss to us all.
Thank you, Miriam, for administering an invaluable support to all Amyloidosis patients. I am assuming that the decision to end the contract is purely financial, as it has been nothing but beneficial to patients.

I wish you all well!

[deBurca]

This is indeed sad and concerning news, I emailed Helen Lachmann to see if there is any information on the service continuing, maybe others might do similar to try and ensure the forum remains available. A copy of my email is below..

Hello,

I was diagnosed with AL Amyloidosis 5 years ago and have been attending the NAC since my diagnosis. I travel from Ireland yearly, made possible by funding from the Treatment Abroad Scheme via the HSE in Ireland. Since my diagnosis I have found the information and support available via the Patient Support Forum, the Patient Information website and the NAC newsletters to be invaluable and of huge benefit to me as I progress through this illness.
It is with some concern that I learned that these supports may be withdrawn through the non-renewal of the contract between the Royal Free Charity and Vered Consulting. I would like to know if this is a decision that may be reconsidered or will these supports be continuing in another form?

Kind Regards
Declan Burke 
 

[deBurca]

And the reply.

Dear Mr Burke

 

Thank you for your email. I agree the patient resource was much appreciated but sadly the funding and contract for the previous arrangement has ended. We will preserve all the of the patient information resources and are working with MyelomaUK about future patient forums as they already provide some support to local groups. I’m sure you already know the international groups based in the USA who we also have links with  (https://www.amyloidosissupport.org/).

 

Best wishes

 

 

Helen J Lachmann MD FRCP FRCPath

Professor of Medicine & Honorary Consultant Nephrologist

Clinical Lead National Amyloidosis Centre

Clinical Service Lead Immunity & Rare Diseases Division

University College London & Royal Free Hospital London NHS Foundation Trust

[freecurry]

May I just echo what the other respondents have said; this Forum has been a lifeline for my husband and myself. Indeed it was finally finding and contacting the forum and the response from Miriam that set us on our way to a diagnosis and treatment after months and months of uncertainty and delay.
I appreciate that funds are tight but it is extremely important for patients and carers to be able to readily access reliable information. The unique selling point of the forum in my view was Miriam's ability to seek out and convey the answer to a query from the relevant NAC clinician where necessary and sadly this will now be lost. Amyloidosissupport.org is a useful general site but obviously USA biased and not much help for specifics when you're being diagnosed/treated by the NHS. Let's hope that Myeloma UK is able to fill the gap in some way.

Thank you Miriam; we're grateful for the support you've given us and no doubt many others. We wish you well in whatever you choose to do next.

[Kathrine]

I joined this site when my partner was diagnosed with AL Amyloidosis/ Multiple Myeloma Dec 21 with poor prognosis. Age only 41 with 2 young children.
He’s doing remarkably well, treated by UCL, had a visit to NAC last week with results showing reduction in Amyloid/ organs working better/ heart has started to heal.

I’m so grateful to this site and the members that replied to my posts.
It gave me hope, factual and reliable information with great advice.

I have kept in contact with a couple of members offering each other support and lending an ear.

It’s such a shame it’s coming to an end as there’s a definite need for it.

Take good care everyone.
Stay as positive as you can.

We have got this 💪💕

[Simon D]

As stated by a previous correspondent this is a sad loss and I would also like to echo what others have already said. The information provided helped my family and I to grasp an understanding of the disease and its implications whilst on the journey to being diagnosed with Hereditary ATTR amyloidosis.

I also agree with the previous correspondent that whilst the Amyloidosissupport.org is a useful general site it is very USA biased in its communication style and content and not much help when you're being diagnosed/treated by the NHS. The same can be said for the Australian site and others from around the world.

Whilst this forum is still operational I would personally like to thank all the dedicated people involved with looking after me at the NAC , Miriam for the construction and maintenance of the NAC patient forum.


Let's hope that Myeloma UK is able to fill the gap in some way.

[HeatherBreeze]

I first found this forum when I was searching for information on amyloidosis as I had MGUS and had developed some symptoms which I was worried could indicate progression to amyloidosis.  My haematologist and GP were initially sceptical and it was Miriam's response to my initial post advising follow up with NAC that led me to get a second opinion and finally a diagnosis.  So for that alone I am truly grateful!
As others have said the Amyloidosis Support is US based so a UK and Ireland group is useful even for practical travel and HSE funding tips as I travel from Ireland.