Representing patients with primary immune deficiencies

I had a really interesting day yesterday in London, at a meeting to consider how to best to replace the now folded Primary Immunodeficiency Association (PiA). It was organised by two professional groups concerned that patients with genetic immune conditions don’t have a voice which is heard nationally. A voice is important because without someone representing us at the policy level our complex needs can be excluded from consideration in key decision-making processes. Establishing a voice is made all the more important by the radical changes being made to the NHS over the next year.

For me a number of key issues came up. The first is that there is a lot of experience and knowledge out there which we need to cultivate, whether it’s condition-specific or locality-based. Condition-specific groups – of which there are a number – understand the impact of particular diseases and syndromes on day-to-day life and offer incomparable emotional and practical support to people with the same diagnosis, or indeed to their families.

Locality-based groups – of which there are fewer, but I think has growth potential – understand the issues faced by people in a given area. Who to contact, what commissioning problems exist, who the specialists are and where to get specialist equipment and supplies if needed.

It would be an unrealistic expectation for a national organisation to develop this type of expertise itself; it would also be a duplication of effort and disrespectful of the efforts of the individual groups. However, at the same time, smaller groups are not able to muster the kind of support and resources necessary to be effective at the level needed to influence governmental bodies, to engage with clinicians and to identify and promote research opportunities. This needs a body which is representative of all the interests, and which commands the respect of patients, agencies and professionals.

This suggests that rather than providing everything, there is need for an umbrella group working at a national level. However, as one of the representative groups pointed out, it’s essential for such a group to reflect all of its constituents, and to remain accountable to them. Regardless of whether a national body is labelled an umbrella group or an alliance or some other word, this accountability is essential, as is respecting the individual groups’ autonomy. This is a key issue which needs careful consideration as we move forward.

Having agreed in principle that a national organisation is a necessary goal, there was a discussion about what the broad objectives such a body might be. It was agreed that there are four principle broad objectives: information, advice and support, policy and representation, research. Some of these objectives, such as advice and support, may also be objectives of constituent groups, but there will likely be aspects best handled at the national level (for example, work) to avoid redundancy of effort. I intend to expand my thoughts on these objectives in further blog posts.

We also discussed a couple of other issues. The one which concerned me the most was how we ensure that any national organisation is truly representative off and responsive to the needs of all of the people affected by primary immune deficiencies. Some people (including me) expressed concern that some PID patients weren’t aware of the meeting and felt they were being excluded. Whilst accepting that perfect representation is impossible without considering the opinion of every single person (including people who don’t have or want to express an opinion!), it was agreed that a priority for the organisation would be to ensure effective representation, both across demographic and condition groups.

It was then agreed that a number of volunteer patients present at the meeting, including me, would carry the project forward as a steering group, along with representatives from the seven patient groups present at the meeting as necessary. There are also representatives from Northern Ireland and Scotland involved. This will be facilitated by the Chief Executive of Genetic Disorders UK. As part of this process we will be consulting as widely as possible with patients and parents of patients in order to ensure that the finished product meets the needs of as many of us as possible.

There will be a formal consultation, but I would also welcome informal comments, ideas and discussions. You can comment on here, message me on Facebook or ask me to email you in the comments (commenting requires you to have an email so I’ll be ale to reply without publishing either your or my email addresses).

I really do welcome your comments, and for me the highest priority is that the patients and the needs of patients are at the heart of the project. There will also be other people you can contact, and you can also get involved through your patient support groups. If you don’t see your PID patient group below, we also want to hear from you.

• AT Society (ataxia telangiectasia)
• Max Appeal (DiGeorge/22q11.2 deletion/VCFS)
• CGD Society (chronic granulomatous disease)
• HAE UK (hereditary angioedema)
• XLP Research Trust (X-linked lymphoproliferative syndrome)
• UKPIPS (primary antibody deficiency and other primary immune deficiencies)
• Genetic Disorders UK (genetic disorders and runs Jeans for Genes)