Campaigning for change
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 other significant developments. A few of the things we’re involved in are detailed below.
The NHS in the UK is also continually evolving. So we try to keep up to date with changes that might affect patients, particularly those with a rare disease focus.
On 28 February 2020, Rare Disease Day will see thousands of people from all over the world come together to advocate for greater patient involvement in research on rare diseases.
It is estimated that there are over 6,000 rare diseases. They affect 3.5 million people in the UK at some point in their lives (1 in 17 people). Collectively, rare diseases are not rare!
In 2019, rare disease patients and families, patient organisations, politicians, carers, medical professionals, researchers and industry came together to raise awareness of rare diseases through thousands of events all over the world.
Could you share your story to raise awareness? Sue Burrell (our BPA administrator and AIP patient) did just that with a TEDx talk at the University of East Anglia on Sat 24th February 2018.
For more information visit www.rarediseaseday.org
Acute care in Scotland
The BPA was involved in a series of meetings during 2015 and 2016 to discuss access to acute porphyria services in Scotland. Access issues included topics such as referrals, testing and onward care. Meetings were well attended by doctors from Scotland, NAPS doctors (from England and Wales), biochemists, geneticists, NHS Scotland commissioners and the BPA.
Following these discussions, NHS Scotland finalised arrangements to commission support for Scottish acute porphyria patients and their doctors from the English NAPS service. This came into operation on 1 April 2016.
A formal agreement enables shared care between NAPS doctors (mainly Dr Mike Badminton from Cardiff) and either Dr Alison Cousins or Dr Peter Galloway from Scotland. Outreach clinics are held once every six months in either Edinburgh or Glasgow. This means that patients in Scotland suffering attacks of an acute porphyria can benefit from the knowledge and best practices of NAPS in England. However, they are still seen through an effective network of local porphyria specialists. Doctors caring for hospitalised patients are able to access the NAPS out-of-hours clinical advice service. This ensures appropriate access to haem arginate treatment for patients in Scotland.
New patients aim to be seen within six weeks initially. This may take the form of a virtual appointment or telephone consultation to establish what support is needed. Patients are then offered an appointment for one of the scheduled outreach clinics.
Genetic Alliance UK
The BPA receives regular updates and supports Genetic Alliance UK, which is an umbrella charity of patient organisations. Genetic Alliance has 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. They try to do this by ensuring that high quality services and information are available to all who need them.
Genetic Alliance UK offers great support to the BPA and has assisted us many times over recent years. They helped us to maintain specialists within the acute care network. They also continue to guide us through the NICE process to obtain certain medicines on the NHS.
For more information see: www.geneticalliance.org.uk
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 included 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 was distributed amongst parliamentarians, stakeholders and policy makers and was 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