Could you kindly tell us something about yourself?
I am the Director of Membership Support at the Pulmonary Hypertension Association (PHA UK), where I have worked for the last ten years. As part of a small yet dynamic team, my role is to ensure the charity is supporting its membership in the best possible way. I manage collaborative partnerships, co-ordinate key projects and advocate on behalf of our members in multiple ways.
According to you, is a patient association important for those who are ill or for their relatives?
I think patient organisations like ours are essential, particularly in a rare disease area like pulmonary hypertension. We bring together the pulmonary hypertension community, which includes patients, relatives and healthcare professionals, and together we are stronger.
Could we ask you what triggered you to become Director of Membership Support of a patients association?
I have always wanted a job role that involves helping people. When I saw the role of project co-ordinator advertised at the PHA UK I thought it would be a perfect opportunity to begin a career in the charity sector, and I’ve really enjoyed the evolution of my role over the years.
Were there any difficulties whilst the association was being set up?
I was not around when the association began so I’m unable to answer this question fully
In Britain do you come up with problems in finding sponsors domestically and internationally? Do you have a special strategy in convincing companies or people for finding aid?
We are fortunate that we are very well supported by our members. We are honoured and humbled by the fundraising activities people organise, and the donations we receive. Fundraising dropped off somewhat during the COVID-19 pandemic, but it has picked up again and we were able to access some supportive grants during this time. We make sure people see that their fundraising and donations are put to good use, and we always
thank people and acknowledge their kindness.
Can you please name a few of the activities organized by your Association to raise awareness?
We organise an annual pulmonary hypertension Awareness Week (which is usually in the first week of November) and we do a lot of work with our social media channels to raise awareness online. We also issue press releases throughout the year around different themes.
Do you organise activities with other associations both on national and on international level for example for certain days?
We support NHS Blood and Transplant (NHS organisation) around their organ donation week, and we support Carers UK (a UK charity) around their annual Carer’s Week. We also recognise World PH Day and Rare Disease Day with our social media activity.
Do you get informative materials you have prepared translated into other languages? If so in how many languages?
All of the information on our two websites can be instantly translated into 99 different languages using an online tool called ReachDeck. You just click on the orange icon in the corner of the screen on our main website (www.phauk.org) and our lifestyle website (www.phocusonlifestyle.org). Our quality of life measure (EmPHAsis-10) – more information here – has now been translated into 41 languages around the world for use in clinical practice and research.
Do the events of the association get coverage on national media?
Our media coverage tends to be more localised, but these locations are throughout the UK.
Is the work carried out by the association centralised or decentralised? Is the association widespread in the country?
We support people with pulmonary hypertension throughout the UK. We have 4,500 members and they are spread across England, Wales, Scotland and Northern Ireland. We also work with the specialist treatment centres throughout the UK.
Can members chat informally about their problems? Are there doctors and/or psychologists among your members?
The majority of our members are patients and their families, but we do have healthcare professionals as members too. We have three private Facebook groups where members can chat about their problems, one for patients, one for carers, and one for people who have lost someone to pulmonary hypertension. Over the years we have also organised many in-person events where members can meet each other and form friendships.
Can you give any kind of funding to patients? Can you supply psychological or any other kind of help for them?
We do not fund individual patients, but we do sometimes access funding that can be used for our wider work. We offer a Listening Line service to help patients who need emotional support (more information here) and we have a self-help programme for members with anxiety (more information here).
What are your targets for the next two years?
Our overall target is to support our membership as we move out of the COVID-19 pandemic and this will take many different forms. We are currently working on a major research project to understand the personal experiences of the pandemic and we will continue to produce supportive materials and resources, provide support services, and raise awareness of this rare condition.
Did your members find reaching their physicians difficult during the Covid-19 epidemic? Was their treatment disrupted? Did they find telemedicine facilities beneficial?
We conducted e a survey with our membership through the pandemic which gave some interesting results in this area. There were 1,000 responses and the results showed that 87% found it easy or very easy to access support from their specialist pulmonary hypertension centre and 47% said they found it difficult or very difficult to access support from their General Practitioner. To help our members make the most of their remote appointments we produced a preparation form (which you can see here).
The cost of our medication is quite high. Is it covered by NHS? Is getting a new medicine approved difficult?
All pulmonary hypertension medication that patients can access through the NHS is free of charge. Most other medication that pulmonary hypertension patients may need comes with a prescription charge of £9.35 per item (some people are exempt from prescription charges, such as the elderly or those in receipt of benefits). Getting new medicine approved can sometimes be difficult. We were involved in helping to secure access to the drug Selexipag a few years ago.
If there is anything you would like to add please feel free to do so.
As a charity in a rare disease area, we feel it is very important to work in collaboration with other organisations. We have an amazing pulmonary hypertension community here in the UK; members are very willing to get involved in our work and that really helps us to achieve our strategic objectives for the benefit of people with pulmonary hypertension.
Interview courtesy of PAHSSc, the Turkish pulmonary hypertension association
Cover photo: Shaun Clayton, Director of Membership Support at the Pulmonary Hypertension Association (PHA UK)