WE NEED YOUR HELP - Parliament to debate UK Strategy for Rare Diseases next week

WE NEED YOUR HELP - Parliament to debate UK Strategy for Rare Diseases next week

Next week, MPs will meet in Parliament to debate the implementation of the UK Strategy for Rare Diseases. This is a unique opportunity for us to raise awareness of the problems facing patients and families affected by rare conditions in accessing a timely diagnosis, coordinated care and appropriate treatment.

To make sure enough MPs attend who support the needs of patients and families living with a rare disease, we are asking all our supporters to please email your MP ahead of the event. A template email which you can personalise and send to your MP can be downloaded here: gallery.mailchimp.com/14477...

If you're not sure who your MP is, and you want to find their email address go to parliament.uk/mps-lords-and...

Thank you


For those of you unable to download the letter template, I have pasted it below for you;

SUBJECT: Please support rare disease patients at the Westminster Hall Debate

Dear [insert name of MP],

Westminster Hall Debate on implementing the UK Strategy for Rare Diseases, Tuesday 28 March between 4:30-5:30pm.

First of all, I would like to send my support to you and your colleagues based in Westminster after the events of Wednesday. I understand this must have been an incredibly difficult time for everyone.

I am/we are writing to you as my/our MP to ask you to attend the Westminster Hall Debate on implementing the UK Strategy for Rare Diseases that will take place on Tuesday 28 March from 4:30-5:30pm. As a rare disease patient/a family member of someone with a rare disease/a patient representative, it would mean a lot to have your support at this debate.

[You might like to insert some information here about your interest in rare disease e.g. do you represent a patient organisation, do you or a family member have a rare disease, are you a clinician dealing in rare diseases etc. Please try and limit your story to a paragraph or two as it can be followed up with more information should your MP show an interest]

Collectively, rare diseases are not rare. In the UK alone, 3.5 million people will be affected by a rare disease at some point in their life – that’s around 4000 people in the average constituency.

About the UK Strategy for Rare Diseases

Recently, the All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions published a report which showed that the UK Strategy for Rare Diseases is not being implemented effectively in England. You can read the full report online on the Rare Disease UK website. The four nations of the UK have until 2020 to implement the 51 commitments outlined in the plan, and while the departments of health in Wales, Scotland and Northern Ireland have all developed implementation plans, the Department of Health in England has not.

The APPG’s report found that:

•Too many people are struggling to access treatment and information about their condition and care that is coordinated between health and social care services.

•Too many people do not feel involved in decisions about their care and treatment.

•Too many people do not understand what is being done to improve their situation, because developments and progress in this area are not being communicated properly.

[You may want to include a short example (1-2 sentences) of an instance when you have struggled to access a diagnosis, treatment, medicine or coordinated social care]

Patients in Scotland, Wales and Northern Ireland have all benefited from having implementation plans for the Strategy. It is important for patients in England to have an implementation plan as well.

The time to act is now

In the Strategy, NICE is responsible for implementing Commitment 13 to “ensure that there are appropriate procedures for evaluating the costs and benefits of treatments for patients”. However, NICE has recently announced its decision to implement an upper funding threshold for its Highly Specialised Technologies (HST) programme, despite widespread condemnation from the rare disease community. This runs contrary to Commitment 13 in the Strategy. The upper-limit will vary according to the life-long impact of the technology on the patient, varying from £100,000 per Quality Adjusted Life Year (QALY) for treatments that deliver less than 10 QALYs to the patient in their lifetime (additional QALYs); up to a maximum of £300,000 for treatments that deliver more than 30 additional QALYs to the patient in their lifetime.

The HST programme was developed in 2013 to evaluate the effectiveness of treatments for very small patient populations. It was designed to evaluate medicines without relying on calculations of cost per QALY, recognizing that QALYs do not fully capture the benefit a treatment can offer to patients and families affected by a rare condition. Just four medicines have been evaluated since the HST programme began – averaging just one per year, despite a capacity for three treatments per year. The four medicines evaluated to date were shown to bring tremendous value to the patients eligible to receive them, however none of these treatments would have been approved under the new regime.

If implemented, the plans will significantly affect rare disease patients and their ability to access life-changing treatment.

As my/our MP, please show your support by attending the Westminster Hall Debate on implementing the UK Strategy for Rare Diseases, Tuesday 28 March between 4:30-5:30pm. If you unable to participate, you can show your support by asking a question on this important issue.

I/we look forward to your response.

Yours sincerely,

[Insert name]

[Insert role and organisation if appropriate]

Please note: if you require any further information about the UK Strategy for Rare Diseases, the debate, or if you are interested in becoming a member of the APPG on Rare, Genetic and Undiagnosed Conditions, please contact Rosie Collington, Public Affairs Assistant at Genetic Alliance UK on appg@geneticalliance.org.uk or 020 7831 0883


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20 Replies

  • Sorry Paul, there seems to be an error with the link.

  • Hi Wendy39,

    The link is working fine for me. It will automatically download a Microsoft Word document. It may not work on some mobile devices, but should hopefully be fine from laptops and PCs.

  • Great. I'll try my laptop.

  • I only have a very old MacBook, ipad and iPhone Paul. Found out who my MP in new location is though which has been useful!

    Would it be possible to copy and paste the template here please?

  • It's not working from my iPad either, I'll have to trundle over and fire up the PC ....😮

  • I got it fine on my smartphone. Thanks Paul

  • Have shared to my other communities and Facebook as well x

  • Downloaded, altered and e mailed to my MP from my tablet Paul, no problems

  • It didn't work on my old laptop either so I just wrote my own letter to my MP in the end, copying this post. He is SNP so I'm not sure where this places those of us in Scotland/ devolved nations re this debate but hopefully he will attend and do his bit. Posted on FB too.

  • I can't get it to work on my devices. I've written my own and sent my MP a message on his site.

  • When I try to click through the 'gallery' address it says 'Unable to read documeng'

  • Hi Lambassador, due to a number of people having problems downloading the template, I have now added it to the post above.

  • hopefully it's sent as windows mail on W10 is poo

  • Done!

  • Done

  • Done thank you Paul

    I sent my local MP some Lupus UK literature a few years ago she had the decency to email me back and comment on my condition 👍🏽

  • Laptop doesn't work

  • Hi bones-bones, due to a number of people having problems downloading the template, I have now added it to the post above.

  • I have just sent this to my MP, thank you Paul. Will let you know if I hear anything!!

  • I've had a reply from my MP. He won't be there, but is sure his colleagues will raise it. I tried, anyway. Perhaps some of you have contacted his colleagues.

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