Wellbeing Team gets a Boost!

Melissa joins the ASUK Team

We have the fantastic news, that Melissa Crowland who many of you will know as one of our Trustees has now joined our ASUK team as our Wellbeing Coordinator. This will mean Melissa will now step-down from the Board of Trustees but will now have a more direct role supporting the AS Community.

ASUK conducted a survey at the end of 2023 to try and understand what the AS community knew about mental health and how ASUK could support their wellbeing. Comments in the survey showed that people diagnosed with AS have experienced feeling low and isolated, this was especially relevant in lock down during the Pandemic. The survey illustrated that participants believed that maintaining their wellbeing was important with over 80% rating its importance over five out of ten.

“I also wanted to say, how lovely it was to speak with Melissa the other day!
Speaking to someone doing so well that has Alström was just amazing. More of that would be wonderful.
I genuinely am thankful that we have Alström UK, what would we do without you.” (Parent)

With this need in mind, ASUK are piloting a new ‘Wellbeing Service’ where we will develop 1-1 and group wellbeing sessions, webinar sessions for the global community, round table discussions prior to the AS multi-disciplinary clinics and signpost to relevant local organisations for families and individuals to reach out to, as well as wellbeing resources and top tips.

Melissa has extensive experience, knowledge and lived experience herself.

Melissa tells us a bit about herself;

“I am very new to Alström Syndrome, beginning my journey with the condition in 2018. It has been a very interesting journey but I’m very grateful for all the support I’ve had along the way which has given me insights into both my health conditions and myself. I qualified as a Social Worker in 2018 and have always been passionate about promoting and empowering independence both for myself and others. Since graduating with my Masters, I have dedicated myself to working with people with a range of disabilities which has allowed me to achieve all that I have wanted to.

In addition to being the Wellbeing Coordinator for ASUK, I also work as a Counsellor and Crisis Recovery Mentor at a mental health charity. I pride myself on providing a safe, non-judgemental person-centred environment for everyone I work with.

In 2020, I decided to pursue a career in Humanistic Therapeutic Counselling which I completed in June 2023. I believe that everyone deserves a safe space where they can speak freely, open and honestly without fear of judgement and this is what I endeavour to provide for the people I work with.

I also work for my local University’s Service User, Carer Advisory Participation Group (SUPA group). As well as being part of the interview process for prospective students I also provide teaching support for lecturers and have created and taught sessions. I have also collaborated with colleagues to produce guides for both students affected by disabilities and placement providers to enable independence and participation, as well as a piece for the British Association for Social Workers about online working during lock down.

I have worked over a number of years facilitating a group for young people with Alström Syndrome, the condition which I have. This group provides a sense of community for the young people, where they can speak openly about how the Syndrome affects them and be supported by both peers and myself. I also developed talking groups for adults with Alström during the lock down, again to provide a sense of community.

I believe that Mental Health is still stigmatised in our society, with individuals feeling reluctant to discuss any issues. I feel that in order for greater acceptance it is the job of leading organisations such as ASUK to shine a spotlight on Mental Health provision, so that our families can be supported to flourish not only physically but psychologically. Research states that when an individual has good physical health then their mental health is improved. It is important to me that we create the right environment, so that people who are impacted by Alström Syndrome are supported so that they feel empowered to live their best life and develop insights into their thoughts, feelings and emotions.”

Melissa is pictured above

You can find out more about the ASUK wellbeing service on our dedicated Wellbeing Service page which you can access HERE

You can get in touch with Melissa by email melissa.crowland@alstrom.org.uk