NICE AND NHS ENGLAND CONSULTATIONS
NHS England has now released consultations on its generic policies: in-year service developments, individual funding requests, funding experimental and unproven treatments, and continuing funding after clinical trials.
These policies relate to four distinct NHS England processes for funding treatments which are not currently routinely commissioned or subject to a mandated guidance from NICE. In-year service developments are decisions on introducing a new clinical commissioning policy for a treatment or changes to an existing clinical commissioning policy that takes place in-year, ie. not in the standard annual commissioning cycle. Find more details and sign up to their webinars here.
NHS England, with the National Institute of Health and Care Excellence (NICE), has also launched a consultation on NICE’s Technology Appraisal (TA) and Highly Specialised Technologies (HST) programmes. Find more details and sign up to face-to-face and online events here.
Look out for our work in this area
As you are probably aware, we are active in this area of policy and have already produced a Patient Charter on the HST programme. This is a hugely important topic for our members, and this will be reflected in our work on this consultation. In addition to responding ourselves, we intend to provide some support to assist our members in responding. We will be in touch soon with more information about this, and if you have any questions in the meantime please don’t hesitate to get in touch.
ACCESS TO TREATMENTS
On Tuesday 10 October the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions held a hearing on access to medicines in England.
You can read our briefing for the event online. Our summary of the event is available here.
Jayne Spink, CEO of the Tuberous Sclerosis Association, joined the hearing and has written a blog for Rare Disease UK, adapted from the powerful speech she gave in Parliament, about the impact of delays in treatment for patients with tuberous sclerosis complex.
EU DATA PROTECTION REGULATION
We’ve collaborated with over 40 research and patient groups to develop a position on the implementation of the General Data Protection Regulation [2016/679]. You can read this on the Wellcome website here.
BEAN THE DANCING QUEEN
October has been Rett Syndrome Awareness month. Jasmine talks about her sister, Amber, who has Rett Syndrome on the Rare Disease UK blog.
THE FUTURE OF THE EUROPEAN MEDICINES AGENCY
On the Wednesday 12 October there was a Westminster Hall debate about the future of the European Medicines Agency (EMA) following the vote to leave the European Union.
Here is our summary of the debate.
THE ABORTION (DISABILITY EQUALITY) BILL
Last week the Abortion (Disability Equality) Bill had its second reading in the House of Lords. We have circulated a briefing to relevant members of the Lords detailing our position on the proposals in the Bill. Read our briefing here.
ROO’S STORY
SWAN UK member Claire tells her son Roo’s story of life with an undiagnosed genetic condition.
EUROPEAN REFERENCE NETWORKS 101
This week we have a guest blog written by Victoria Hedley from RD ACTION looking at the importance of European Reference Networks for rare disease patients in the UK. Read her blog here.
ETHICS OF NIPT CONSULATION
The Nuffield Council on Bioethics is looking to talk to people affected by genetic conditions about their views on testing in pregnancy. The Council is investigating the ethical issues raised by a new kind of test – non-invasive prenatal testing (NIPT) – that can test for a range of genetic conditions safely and accurately early in pregnancy.
We would like to ensure that they hear from a wide range of people affected by genetic conditions who can talk about the advantages and disadvantages of prenatal testing and the future uses of NIPT.
Those taking part must be 18 or over and are asked to spare an hour to talk on a one-to-one basis. You can see our most recent submission on the topic of NIPT here.
For more details or to take part please contact Louise and Beth.
THE HIDDEN COSTS OF RARE DISEASE AND MdDS
Polly Moyer talks about the hidden costs associated with having Mal de Debarquement Syndrome over on our blog. Polly recently took part in the Hidden Costs project.
AGAINST ALL ODDS: OUR DIAMOND BLACKFAN ANAEMIA STORY
Zoe talks about her experience of having a child with Diamond Blackfan Anaemia on the Rare Disease UK blog.
JOIN OUR PATIENT PANEL
Can you help us review the information we give to patients?
We’re looking for people to join our patient panel that looks at the information we produce. We want to ensure that our information is appropriate for and accessible to patients. If you have questions about what this would involve please email us. Sign up here if you’d be happy to help.
ANSWERING QUESTIONS ABOUT RARE ANAEMIA
Priority Setting Partnerships (PSP) set out to create a research agenda that reflects the opinions of patients and the clinicians working in a particular disease field.
Here we talk about the benefits to be gained from setting up a PSP, and the survey just launched by the Rare Anaemias PSP.
HOW I USED MY TREATMENT TO SAVE OLD WORKS OF ART
Dr Sandra Grantham has written a blog for Rare Disease UK about her experience of the condition lymphangioleiomyomatosis and the discovery that it led to.
SUCCESSFUL PARTNERSHIPS 2016
Did you miss our conference last month? See what people were saying on Twitter in this Storify from the event.
COULD YOU BE OUR NEXT EXECUTIVE DIRECTOR?
DEADLINE
Friday 18 November 2016
As many of you will be aware our Director, Alastair, is retiring in 2017. We’re now on the hunt for someone to take on the role. Here you will find the job advert and job description. Please pass this on to anyone who you think would be interested in the role.
EVENTS AND NEWS FROM OUR MEMBERS AND ELSEWHERE
INTRODUCTION TO PARLIAMENT
WHEN
Starts Monday 14 November 2016
Are you looking to get a better understanding of what Parliament does and how you can engage with it? This free, online, FutureLearn course might be for you.
PERSONALISED HEALTHCARE: MAKING THE MOST OF GENOMICS
WHEN
Tuesday 29 November 2017
WHERE
Robinson College, Cambridge
PRICE
£65
This is an event run by the PHG Foundation and will be a full day of scientific updates, policy discussion and networking on the topic of personalised healthcare. Click here for more information.
SCOTTISH CANCER CONFERENCE
WHEN
Monday 21 November 2016
WHERE
Edinburgh
The Scottish Cancer Conference 2016 will look at the progress made to date, and the future priorities of the Scottish Government’s Beating Cancer: Ambition and Action strategy. Details and booking can be found here.
LEAVING THE EU: PRIORITIES FOR WALES
WHEN
Monday 14 November 2016
WHERE
Ebbw Vale Institute, Ebbw Vale
The Welsh Affairs Select Committee is investigating the priorities for Wales in EU negotiations. They are running an event for the public to contribute to this debate. Find our more and book your place here.
REPRESENT PATIENTS AT THE GCRB
DEADLINE
Friday 18 November 2016
Genetic Counsellors often play an important part in the experience of families affected by genetic conditions. The Genetic Counsellors Registration Board (GCRB) exists to establish, maintain and improve standards of genetic counselling practice in the UK. The GCRB is looking for a new patient and public representative to sit on its Board.
Further details of the position and how to apply are here.
INTRODUCING THE NEW PTEN GROUP!
The new group will be supporting patients with PTEN genetic alterations PTEN Hamartoma Tumour Syndrome (PHTS), Cowden’s Syndrome (CS), Bannayan-Riley-Ruvalcaba Syndrome (BRRS) or Proteus/Proteus-like Syndrome (PS). Their first family day will be on Saturday 19 November in London – see their new website for further details.
PRIMARY CARE GENETICS WORKSHOP
WHEN
Friday 5 May 2017
WHERE
Royal Collage of General Practitioners, 30 Euston Square, London
This is a workshop aimed at professionals working in primary care, and those involved in the education of primary care professionals. The event will be looking at best practice and introducing a series of online educational material. Click here for more details.
THE FUTURE OF EUPATI
EUPATI is the European patients’ academy, providing education and engagement for patients on the topic of medicines research and development. The EUPATI project was funded by a grant from the Innovative Medicines Initiative (IMI) which ends in January 2017.
From February 2017 EUPATI will transition to a patient-led programme within the European Patients Forum – as a continuation of the educational programme. Read more here. You can also read about the benefits of the EUPATI Patient Expert Training Course (which will continue under the new arrangements) here.
INTERNATIONAL
CANAVAN PATIENT REGISTRY
The International Canavan Patient Registry is looking to recruit patients. Please spread the word with anyone who is affected by Canavan Disease.
Find out more here.