The BPA is continually involved in campaigning for change, both in the way the condition of porphyria is presented in the media and in keeping up to date with various other significant developments, a few of which have been detailed below.
Acute care in Scotland
A meeting was held in Glasgow, in October 2015, to discuss access to porphyria services in Scotland, including issues concerning referrals, testing and onward care. The meeting was well attended by doctors from Scotland, NAPS doctors (from England and Wales), biochemists, geneticists, NHS Scotland commissioners and the BPA.
The current situation was highlighted, and best practice strategies and pathways were discussed. The BPA were delighted to be involved in putting forward the patient perspective, by demonstrating concerns received from our members.
Over the coming months more work will go into establishing effective networks in Scotland. We look forward to providing further updates as soon as they are available.
National Acute Porphyria Service (NAPS) changes
As most of our members will be aware, the National Acute Porphyria Service (NAPS) has recently been changed.
Despite significant efforts from the BPA committee, the porphyria centre at Addenbrooke’s Hospital, Cambridge closed last year. When it was clear that Cambridge was closing, the committee pressurised NHS England (who manage the NAPS service) to keep Dr Penny Stein. At the last minute, that was successful, and Dr Stein has moved to King’s College Hospital, London. She is currently running outreach clinics in Peterborough and Middlesbrough, and continuing to run an outreach clinic in Leeds with Dr Barth. The other centres all remain as before.
Dr Stein’s address is:
Dr Penny Stein
Department of Haematological Medicine
King’s College Hospital NHS Foundation Trust
For any queries, please do not hesitate to contact our helpline on 0300 30 200 30 or firstname.lastname@example.org.
Rare Diseases UK
A BPA representative attended the Rare Disease Day reception, held at Westminster on 28 February 2011, which was well attended by representatives of over 100 different conditions, medical advisors and politicians. It is estimated that there are over 6,000 rare diseases affecting 3.5 million people in the UK at some point in their lives (1 in 17 people). Collectively, rare diseases are not rare!
The aim of the reception was:
- to raise awareness of rare diseases
- to emphasise rare diseases as a health priority
- to ensure that by acting simultaneously and collaboratively, nationally and internationally the voice of rare disease patients is heard by more people
- to highlight the issues affecting people with rare diseases
- to bring all of the stakeholders involved in rare diseases together, including patients, families, carers, policy makers, healthcare providers, clinicians, researchers, health workers, industry and patient organisations
- to coordinate policy actions for rare diseases at each level, across the UK, at European level and internationally.
RDUK’s new report “Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy” was launched.
The theme of Rare Disease Day 2011 was “Rare but Equal”.
In 2011 Rare Disease Day sought to draw attention to:
- the gaps in health that exist for rare disease patients between and within countries in the EU
- the gaps in health that exist for rare disease patients compared to other sectors of society.
- equal access for rare disease patients to healthcare and social services
- equal access to basic social rights: health, education, employment, housing
- equal access to orphan drugs and treatments.
Reproduced from literature provided by Rare Disease UK
For more information see: www.rarediseaseday.org
Better Access to Travel Insurance Forum
In 2010, the BPA supported the PNH Alliance campaign to improve access to travel insurance for people with rare conditions.
The BPA and their members helped in the distribution and completion of a survey, which formed the basis of PNH’s report into the subject. The report includes an introduction and context to the travel insurance campaign, the ambitions of the campaign, the current government advice on travel insurance, the findings and recommendations from the patient experience survey and details on the establishment and remit of the Better Access to Insurance Forum.
The report is to be distributed amongst parliamentarians, stakeholders and policy makers and be the central point of discussion at an event in Westminster to engage political support for this campaign.
For further information, please go to: www.pnh-alliance.org.uk
Genetic Alliance UK
The BPA receives regular updates and supports the Genetic Alliance UK which is an umbrella charity of patient organisations with a membership of over 130 charities supporting all those affected by genetic disorders. Their aim is to improve the lives of people affected by genetic conditions by ensuring that high quality services and information are available to all who need them.
Among other things, Genetic Alliance UK has responded to the Department of Health’s consultation on Value-Based Pricing. Their response calls for new measures of value to cover all aspects of treatments that are valued by patients, and for the system to include treatments for rare diseases. They also explain views on how patients can be equal stakeholders in the decision-making process, as they are in European regulation of pharmaceuticals.