In a powerful and raw meeting on 28 April, the All Party Parliamentary Group for Axial Spondyloarthritis brought together people with axial SpA, health professionals in rheumatology and psychiatry and policy experts to talk about an issue that is important to so many with axial SpA – mental health.
Tom Randall MP, who lives with the condition, chaired his first full APPG meeting having been elected at the last meeting in November.
‘I was lost, I was completely lost in a world pain’ (Paul Curry)
Paul Curry, Frances Reid and Raj Mahapatra bravely took to the stage to share very personal accounts of how waiting for a diagnosis and living with pain has impacted on their relationships, ability to work and, as a result, emotional wellbeing.
‘Getting support for my mental health would be a game changer. The fear of letting people down is immeasurable.’ (Paul Curry)
Giving the health professional perspective, Ben Thompson, Consultant Rheumatologist at Newcastle Hospitals NHS Trust spoke about the challenges for rheumatologists, including little or no training following medical school, variable and slow referral pathways plus the difficulties in convincing managers that mental health support should be funded.
NASS was also pleased to see the first results from research being carried out at Kings College London presented by Sophia Steer. The research, funded by NASS, showed that the lack of authentication (Jill – is this the right word?) from health professionals, stigma of back pain and delayed diagnosis all lead to mental health issues. A review of social media showed that 63% of of post form people with axial SpAhad negative emotions attached to them.
‘I was flying to meetings, I tried to keep going, but I just couldn’t keep going. I ended up having a breakdown, was signed off work and diagnosed with anxiety and depression. Work were brilliant… But for me having had some counselling the thing that was frightening me the most was having a time limit to get better. I decided to leave my job which was really hard.’ (Frances Reid)
There is a need with musculoskeletal conditions and mental health to move beyond symptom alleviation and move to optimising function. When symptoms are alleviated what does the patient need such as a return to work or to address an aspect of family or social life? Associate Professor of Psychiatry Max Henderson told the meeting Drawing on work as an example, he told the meeting this was the perfect example of how health and policy can come together to achieve better outcomes for people living with long term conditions.
‘I’m really aware I’m really lucky I don’t have to make that choice about stopping work to look after myself’ (Raj Mahapatra)
Finally the audience heard from Sue Brown, CEO at ARMA who spoke about ARMA’s round table and position paper which discussed issues and possible solutions. ‘Pain, mental health and disability are all interlinked and all impact on each other. They are not separate things.’ Sue told the meeting. She shared the three main issues for people with musculoskeletal conditions that impact on their mental health – long delays, feeling alone and transition periods in life. ARMA has published a set of recommendations on these very issues. http://arma.uk.net/call-for-mental-health-prioritised-msk-patients/
‘Pain mental health and disability are all interlinked and all impact on each other. They are not separate things.’ (Sue Brown)
NASS will now be using the discussions from this meeting to move forward with plans to focus on mental health across all areas of our work, including working to change in policy and guidelines, raising awareness and helping rheumatology departments to get the support they need.
Watch the full meeting here – it’s on YouTube now.