Mental Health support for families and patients with Neuromuscular conditions like Duchenne has been poor for too long. Life in this world can be hard and we want to help make it a little bit easier for all those touched by it.
HF conducted research into the well-being of children living with Duchenne and their families via a social media request for feedback and were staggered by the responses.
The feedback was overwhelmingly negative in regard to the provision in place through the NHS with many families feeling let down by the lack of mental health support.
We spoke to several hospitals and NHS Trusts to establish the offering to families upon receiving a Duchenne diagnosis as well to those living with the long term effects of having a life-limiting condition.
We found that there was inconsistency in the type of support offered. Some hospitals have in-house psychologists that they can refer families to, some refer back to the families’ GPs, some refer to external agencies and charities and some had neuromuscular specialist psychologists within their team. In all cases the hospitals were massively time poor, had extensive waiting lists and were in favour of a third party, such as HF, being able to offer well-being support to both children with Duchenne, and their immediate families.
The Pilot Study
The small mental health study conducted in the Duchenne community revealed remarkably positive outcomes from participation in six sessions with a clinical psychologist. Participants reported improved emotional well-being, increased coping skills, and a sense of support and understanding. The therapy sessions provided a safe space for individuals to express their emotions and concerns, leading to enhanced self-awareness and empowerment. Many also reported reduced anxiety and depression levels, and improved social connections.
The study's results highlight the significance of accessible mental health support tailored to the specific needs of the Duchenne community.
We understand the efforts made by our colleagues in the Duchenne Community to improve the Psychosocial standards of care and NHS provision for mental health support for Duchenne patients and parents, and we fully support their goal. However, we firmly believe that immediate help is crucial during times of crisis. That's why Harrison's Fund is committed to providing 'Chrysalis Grants' of up to £1000, which will enable individuals to access private therapy sessions while also assisting them in gaining access to the NHS Psychology Service waiting lists for additional and ongoing support. Our pilot study feedback indicated that the priority for funding should be with newly diagnosed parents and those facing bereavement and end of life. Chrysalis will start there and will expand as funding and scope allow and our provision grows. We will move as fast as we can. This is just the start of our aim to bridge the gap between 'Need' and NHS 'Supply'.