The everyday impact of rare diseases: supporting your patient community
Patient groups have a huge role to play here, which is why, on Thursday 17th January, we hosted our first workshop of 2019 on the everyday impact of rare diseases, and how patient groups can support their communities.
Throughout the day we focused on two main areas: the types of public and social services rare disease patients and families are likely to require, and how patient groups can support their access to these services, and, projects patient groups can run directly to address some of the day-to-day effects or limitations of rare conditions.
Rachel Gibson - Rare Conditions Officer, Contact
Rachel also shared one of their face-to-face support projects – By you side. By your side is an initiative Contact started to provide support to families at the point of diagnosis, and directly in the hospital. They run a drop in service at a number of children’s hospitals around the country, and hold information stands and deliver workshops on a number of topics pertinent to families. Their parent advisors also visit families on the hospital wards, so parents can stay by their child’s side, whilst also having a friendly face to chat to, or shoulder to lean on. Finally, Rachel touched on the areas rare disease-specific patient groups can provide additional support, such as in-depth information on their rare condition, linking similarly affected families, funding research, and supporting adults.
Laurence Woollard - Director, On The Pulse Consultancy
Living with Haemophilia requires a lot of self-management, but research has shown that support in this area is lacking for young people who are transitioning from paediatric to adult services, which mirrors Laurence’s own experience. As a result, it can take more than 10 years for young people to move from first practicing to self-infuse, to a point where they are effectively self-managing their condition. As Lawrence shared, this, combined with a person’s lifestyle choices, can have a huge impact on the physical and mental wellbeing of patients.
Laurence wants to address this by establishing a peer-led education project that will provide opportunities for young people to come together and share their lived experiences, and understand the challenges their condition presents. The hope is that, through peer support, young people can learn from one another and feel empowered to take control of their healthcare choices.
Lesley Harrison - Patient Support Manager, AKU Society
Lesley explained the importance of patient groups playing a support role in these areas, and shared examples of some of the many initiatives the AKU Society have implemented to assist their community. These have included developing a controlled protein recipe booklet for patients taking nitisinone, identifying home equipment to make everyday tasks more accessible, conducting home support visits, and providing funding for patients who require mental health counselling.
Ann Kerrigan - Patient Representative, AKU Society