Patients without a diagnosis are often overlooked but we want to give them a voice in parliament

Last weekend, we attended an event run by SWAN UK (an initiative of Genetic Alliance UK) at Thames Valley Adventure Playground (TVAP) for SWAN UK families to get together in an environment suitable to their children’s needs. SWAN stands for syndromes without a name.

Members of SWAN UK are parents of disabled children who are thought to have a genetic syndrome or condition that doctors have so far been unable to identify. SWAN is not a condition, it is not a diagnosis, and it does not refer to one specific syndrome or condition. In fact, the reason that many children remain undiagnosed is because it is highly likely that they have a very rare syndrome or condition.

The work that SWAN UK does, and the support they provide, is really important to families with undiagnosed children. The SWAN UK community has told us that having an undiagnosed child can be extremely isolating. Questions from other parents can feel impossible to answer when you don’t have a diagnosis to give them and planning for the future isn’t easy when you don’t know what your child’s condition will look like in a few years time.

For SWAN UK families, who do not feel like they fit into the same boxes as other families with diagnosed conditions, the SWAN UK Facebook group is a lifeline. Finding other parents in similar situations and sharing experiences can bring immense benefit to families. Events like the one at TVAP are an extension of this.

TVAP is a playground specially designed for children and adults with different types of special needs. The site has indoor and outdoor activities, including a sensory garden, castle, crazy golf, an indoor sensory room, music and soft play areas. On the day SWAN UK also arranged face painting, balloon animal making, and Tomcat Trikes.

We took the opportunity on the day to talk to the families about some of the policy and public affairs work that Genetic Alliance UK and Rare Disease UK are currently doing. It was interesting to talk about the struggles & challenges SWAN UK families face, how they are both similar, and different, to those faced by individuals with a rare and/or genetic condition. In particular, our discussions focused around the All Party Parliamentary Group (APPG) that we are setting up in parliament. Many of the families were keen to work with us on this and wrote letters to their MPs there and then!

An APPG is a group of MPs and Peers from different parties who work together to highlight issues on a topic that the group represents. Some APPGs have been extremely effective in raising the profile of issues and making sure that MPs and peers are well informed about the perspective of affected communities.

The voice of those without a diagnosis is often forgotten and their needs overlooked. We hope that this APPG will mean that the voices of SWAN UK families (in addition to those with rare and/or genetic conditions) are heard within Westminster.

Providing a voice for the SWAN UK community in parliament should open doors, enabling us to push for improved diagnosis which in turn will hopefully unlock access to effective medical care and treatment. This should benefit all families and individuals with rare, genetic and undiagnosed conditions.

Helping the government understand what it can do to help improve the lives of families and patients is so important – and it was wonderful to see so many SWAN UK families take the time to ask us questions about the group and to write to their MPs asking them to get involved.

Find out more about the APPG here.

About Beth & Emily

Beth McCleverty is the Policy & Communications Assistant at Genetic Alliance UK. She supports the work of the policy team, manages social media content, and communications with members and external stakeholders.

Emily Muir is the Public Affairs Assistant at Genetic Alliance UK. She supports Genetic Alliance UK’s policy and public affairs work – with a particular focus on the Rare Disease UK campaign.

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