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23rd March, 2021 – 25th March, 2021

Towards the end of March, we hosted a three-day online workshop which focused on mental health and wellbeing within the rare disease community. The goal of the workshop was to provide patient organisations with an in-depth understanding of mental health and give them the tools to recognise and cope with different mental health situations or challenges that could arise.

We know that living with a rare disease can have a huge impact on every aspect of life, however, physical health is often prioritised over mental wellbeing. Now more than ever, it is vital that our mental health and the mental health of those around us is being looked after. We know that patient organisations are at the heart of providing support for their rare disease community. This workshop provided guidance and practical advice to enable them to better support the positive mental health of those they interact with. Over the course of the three days we took the time to highlight already existing resources that are available to help patient groups. We also invited speakers from the rare disease and healthcare community to discuss their mental health projects to provide ideas and inspiration.

We broke the topic down into three two-hour long sessions, day one ‘Awareness, resources and safeguarding’ introduced mental health and looked at the impact having a rare condition can have on mental wellbeing. Day two ‘providing services to support mental health and wellbeing’ saw speakers from patient organisations explore and analyse mental health projects they have undertaken. On the third and final day of the workshop we looked at ‘supporting your community through serious illness’ where we discussed grief and bereavement and provided advice and guidance on how to handle difficult conversations and situations.

Read our day-by-day breakdown! 

Philippa Norman, Projects Coordinator, Findacure. Isabel Rundle, Engagement and Support Officer, GAUK. Helen Payne, Owner and Trainer, Greenfern Training.

Isabel Rundle from Genetic Alliance UK kicked off day one of our workshop by discussing three reports released by GAUK (Rare Experience 2020, The Rare Reality of COVID-19 and Living with a Rare Condition: The Effect on Mental Health). Isabel pulled out key themes from the reports that demonstrated the impact that living with a rare condition can have on mental health. One of the themes centred around diagnosis, as we know many patients in the rare disease community often have to wait a long time to receive a diagnosis and may be mis-diagnosed multiple times. GAUK found that not only does this affect a patient’s physical wellbeing as they are unable to access the correct care, it also has a large impact of individuals mental health. The reports also found that a lack of awareness of healthcare professionals surrounding rare conditions and poor coordination of care were factors that negatively impacted the mental health of patients. Isabel went on to talk about how the effects of Covid-19, for example, increased isolation and reduced access to support have increased pressure on the mental wellbeing of those in the rare disease community. She concluded her incredibly informative talk by outlining GUAK’s official recommendations which stated that healthcare professionals should be trained to recognise the effects that rare conditions can have on mental health. They also recommended that rare disease services need to routinely include mental health assessments.


The next talk of the session was conducted by our very own Philippa Norman. Philippa gave a quickfire overview of existing resources that patient groups can use to help their community look after their mental health. She covered organisations that work with children and young people, for example, the Rainbow Trust who support families with a seriously ill child. She also highlighted places where those experiencing problems with their mental health can turn to get counselling, for example, the NHS platform Every Mind Matters and ‘Turn2me’ which offers up to 6 virtual counselling sessions. For the full list of mental health resources please click here.


Day one ended with Helen Payne from Greenfern training who explained the importance of safeguarding within organisations. Helen defined safeguarding as ‘protecting people’s right to live in safety, free from abuse and neglect’. She went on to discuss what should be included in a good safeguarding policy, for example, having separate policies for adults and children, a statement that outlines the organisations commitment to safeguarding and clear policies and procedures which state how the organisation would deal with a safeguarding issue. The second part of Helens talk focused on how to hold supportive conversations with someone who is experiencing challenges with their mental health. She gave practical tips and guidance, such as to ask open questions, avoid having an emotional response and be ready to signpost them to the appropriate support. She also emphasises the importance of good, open and active listening.


The session ended with some excellent improv from Helen and Philippa who simulated a conversation where Philippa confided in Helen about struggling with poor mental health . Overall it was a great first day!

Jared Griffin, Founder and CEO, Annabelle’s Challenge. Michelle Ainsworth, Head of Engagement and Logistics, Over the Wall. Claire Robinson, Training and Regional Delivery manager, Contact.

Day two of the workshop focused on examples of mental health projects from within the rare disease and healthcare community and the successes and challenges of those projects.

Jared Griffin kicked off the session by discussing the work Annabelle’s Challenge does to support the positive mental health of their community. Mental health came onto their agenda when they received a call to their helpline from a patient experiencing challenges with their mental wellbeing. Jared explained how the organisation realised they did not have the policies or procedures in place to help them appropriately handle the situation and quickly looked into implementing a safeguarding policy. The first step they took was to train their staff and patient coordinators through the MHRA in mental health and safeguarding. They also sent out patient member surveys which revealed that 64% of people felt that mental health and wellbeing was a challenge due both to Covid-19 and living with a rare condition. Jared went on to talk about how Anabelle’s Challenge responded to these findings; they set up a VEDS support programme, implemented a peer support system where they connect families who are in similar situations so they can go through their journey together, they also created a signposting sheet which is displayed in their clinics with details of mental health resources. In addition, they set up a dedicated page on their website which explains the mental health support that they offer and signposts to additional resources. Overall Jared gave us an informative insight into the steps a charity can take to better support the wellbeing of their community.


Our second presentation on day two was by Michelle who spoke to us about Over The Wall’s amazing new initiative, Camp in the Cloud. Camp in the cloud is a virtual activity camp for children with health challenges and their siblings and families. The camps are free for everyone and families can be referred or apply directly on their website. Michelle began by highlighting the main goals of the camps which included, giving each child or young person a sense of belonging, improving their self-esteem, enabling them to make friends and reducing isolation. She went on to explain how the camp works; campers are sent resources for games and activities and are able to interact with other attendees via message boards and video calls. The camps offer a large range of activities including arts and crafts, problem solving, STEM and family activities all designed challenge the campers and boost their confidence. Michelle shared with us testimonials from previous camps which showed the positive impact they had on the mental wellbeing of attendees who felt ‘happy’, ‘confident’, and ‘not alone’ after the camps. By the end of her presentation Michelle had all of us wanting to sign up to a camp!


To round off day two we heard from Claire from Contact, a charity which supports families with disabled children. Similar to Annabelle’s Challenge, Contact saw the increased pressure the pandemic was putting on families and carers and recognised the need to provide extra services to support the mental health of its beneficiaries. It’s answer to this was to create a Listening Ear service. Claire explained to us that the service provides parents and carers with one-on-one emotional support in a confidential space. People can sign up via Eventbrite for an hour-long phone call with a Listening Ear Advisor who are there to listen to them and can also signpost to other mental health resources if necessary. Claire went on to provide us with details as to how Contact runs the service. She explained that the advisors are not trained counsellors but do receive training from the Helpline team and are expected to be able to signpost effectively. Advisors are hired on a freelance basis which makes it easier for the charity as they are not taking on fixed costs. It was great to hear about the work at Contact, and  their Listening Ear Service is a great example of a mental health project that a charity can implement.

Dan Lewi, CEO, the CATS Foundation. Bobbi Riesel, Operation Lead, Harrow Bereavement Care. Clare Kassa, CEO, Sibs. William Mackenzie, Family Support Worker, Rainbow Trust.

Being diagnosed with a life-limiting condition, and experiencing bereavement and grief are often a heart-breaking reality of the rare disease community. However, it is not a topic that is often spoken about which makes it hard to know how to help those in need. Day three of our workshop aimed to change this with a jampacked schedule of four speakers who shared their personal experiences of grief and bereavement and also provided practical guidance as to help others going through difficult situations.

The day started off with a talk from Bobbi Riesel who began by outlining the kind of emotions someone dealing with bereavement might be feeling. These included, but were not limited to, sadness, anger, guilt, loneliness, disbelief, fatigue, anxiety, shock and helplessness. Bobbi also explained how feelings of bereavement can also manifest in a physical way as pain, tightness in the chest and throat or a lack of energy. Building on from discussions we had on day one the rest of the presentation focused on how to approach and handle conversations around grief and bereavement. Bobbi explained to us that good listening meant listening with your undivided attention and without interruption, she encouraged us to focus on what is actually being said (instead of what you expect to hear) and talked about the importance of watching for non-verbal clues and reading between the lines. She also gave us some useful tips to bear in mind when responding to these conversations which included being empathetic, asking minimal questions, avoiding expressions of over-concern or shock, not making promises or giving advice and avoiding personal references. The main take-away from Bobbi’s informative presentation was that everyone experiences bereavement differently and it is essential to enter these conversations without judgement or expectation.


Our next presentation was by Dan Lewi.Dan and his wife Patricia founded the CATS foundation in 2011 after their daughter Amélie was diagnosed with Tay-Sachs, Amélie sadly died from the disease in 2017. Dan spoke about his personal experience of the grieving process and explained how the CATS Foundation strives to help others in the same situation. Similar to Bobbi, Dan stressed how personal the grieving process is and how no two people will have the same experience. The CATS Foundation keep this in mind when offering support to their community, they try to help people find the path that works for them by listening to them, crying together, reminiscing and, where appropriate, signposting parents and families to additional resources. Dan told us how the Foundation found that small things make a big difference to people’s lives and the importance of letting their community know that they are there for them.


Up next we heard from Clare Kassa,the CEO of Sibs. Sibs is a UK charity dedicated to supporting the siblings of disabled children and adults. Clare started off her presentation by highlighting some of the factors that may have an impact on the mental wellbeing of siblings. These included receiving less attention from parents, struggling to get enough sleep, problems with getting homework done and difficulties socialising with friends. Clare went on to discuss bereavement specifically and explained how siblings may experience feelings of grief while their siblings are still alive. These could be feeling a sense of loss for the relationship they could have had with their disabled sibling or for their own future, as many siblings decide to stay close to their families so they can offer support. Clare advised us of the importance of helping siblings self-identify and signposting them to the support that is available. Sibs has a section on their YoungSibs website which is dedicated to grief and they also have support groups for adults’ siblings to help them feel less alone.


To round off the final day of the workshop we heard from William Mackenzie. William discussed the incredible work the Rainbow Trust does to support families who have a child with a life threatening or terminal illness. William explained how the Trust pairs families with a single Support Officer who is there to provide them with emotional and practical support throughout their entire journey. He highlighted the benefit of having one support officer as a point of contact as it meant the family and Support Officer could create a genuine bond, share memories and avoid the trauma of continually telling their story to new people. William went on to discuss the importance of providing support for the whole family. They have initiatives specifically for siblings where they take them for days out and host online events, and they have also set up a ‘dads’ support group. William concluded his presentation by explaining to us the practical support the Trust offers to families. They help with housework, pick up groceries, help with child-care and often transport families to and from hospital appointments. Williams talk provided us with excellent examples of how to support families going through dark times.


Day three was a great way to finish off our workshop, it was inspiring to hear both the personal experiences of our speakers and practical examples of how we can be supporting our rare communities!


Supporting your community: mental health and wellbeing

by Hannah Harvey time to read: 12 min