It is estimated that there are up to 1.5 million people in the UK caring for a friend or relative with a Mental Health Condition. (Carers Trust 2013) These conditions range from caring for someone with a learning disability, (e.g. Autism) a functional mental health condition (e.g. schizophrenia) or an organic mental health condition (e.g. Dementia). The challenges are similar to those caring for someone with a physical illness or disability but the sheer unpredictability of a mental health condition puts a carer on ‘watch’ 24/7 suffering sleepless nights, exhaustion, a forfeiting of a social life and juggling their needs with those of the person they care for.
Many Carers and service users have expressed their frustration in trying to access services, delays in assessment and diagnosis and their biggest beef? No-one listens to them!!
‘Every time we are involved in a service change we are asked for our views but no-one really listens and we are never included in the final decision making process – lip service really just to tick a box’
Well things were about to change!!
Over the last 2 years the Hospital Outreach Project has been involved with the Service User and Carer Participation Group held in Cefn Coed chaired by Maria Anderton Head of Mental Health and Learning Disability Nursing Swansea Locality. Its purpose to involve service users and carers meaningfully in all aspects of service provision, improve communication and involvement of families and improve person centred care. Carers have already contributed to scrutinizing the usefulness of literature given to families of patients admitted to Ysbryd Y Coed and made some very valid changes. Challenging practices or actions related to poor cultures of care was going to be a harder nut to crack! However, Swansea Bay University Health Board (SBUHB) was committed to doing a Listening Event with Staff, people and carers who use services. This commitment followed on from work in 2018 supported by the NHS Delivery unit that looked at making better use of feedback regarding NHS services. So in collaboration with ourselves and HAFAL a ‘Listening Event’ took place on 26th April 2019 at the YMCA. Over fifty people attended including Carers , people who used services, service reps and Swansea Bay Health Board Staff. The Health Board presented the following:
- They shared anonymised ‘real’ feedback about Swansea Bay Health Board (HB) Inpatient mental health services (these are the wards in Cefn Coed hospital). Feedback included actual complaints, compliments, incident forms and internal and external review forms.
- Invited people who attended the event to comment on what went well, what was positive about the feedback, what needed to be improved and key themes.
- For people who attended to use the information to suggest improvements and actions that the HB could then communicate to its services to shape addressing improvements or continuing good practice.
Let me tell you no-one held back and the voices of all were heard loud and clear. As one Carer said to me ‘I really felt I was part of something important and for once my opinion was important, I felt people were listening to me and not just waiting to reply’
The proof of the pudding will be in the eating and we had the best ‘ingredients’ on the day. However the best way to test the quality is to taste it rather than admire its appearance, but I am confident that this event and working together in the future will bring about change and give service users, families and carers a voice and equal footing in the health arena.