Carers Week: Matthew’s story
There is a lot of stigma associated with caring, particularly being a mental health carer. I supported my mother, who had psychosis, for 18 years until she passed away a few months ago. I also support my two brothers who have autism who live nearby.
The stigma that my mother felt having her illness passed on to me as her carer. At times I felt shame and didn’t want others to know I was caring for someone with mental health needs.
Over the years I started to challenge that stigma and felt that carers should speak out. I’ve set up carers’ forums in Lewisham, Lambeth and Southwark, which all run once a month. These forums empower carers and raise issues. We work closely with the Trust’s Involvement Leads Alice Glover and Jane Lyons and other staff. Carers can query, praise or feel educated - for example we recently met the Trust’s Mental Health Act team to find out about changes due to Covid-19.
I’m also in the Trust’s carers and service user advisory group in Lewisham and run a carers’ peer support group in Greenwich. I’m involved with SUITE, which involves carers and service users in developing training for Trust staff.
Racism is a big issue today, and the impact of racism on BAME communities and how it can contribute to mental illness. These are important issues for the Trust and carers to be involved in. It’s important that Trust staff engage with BAME carers.
This is why I would like to mention the BAME Carers’ Forum in Lewisham. We recently had the Trust Equality Manager Macius Kurowski engage with us and other Trust staff attending the forum each month.
My mum was cared for by the Trust for many years. I’ve had a lot of support from the Trust and rate highly how it involves carers. There were difficulties and challenges and there is still a lot to do but they should be really proud of involvement. The staff are under a lot of pressure and work so hard. I hope they will keep involving and raising the profile of carers, especially during Carers Week.
The situation with Covid-19 is very challenging for carers. A lot of carers who go to my groups and forums are upset that they can’t visit their loved ones on the wards. We need to be resilient and positive, and have hope that we can pull through.
I want to tell carers that they are doing a great job. Carers shouldn’t be forgotten. We need to value how much carers contribute to the NHS and social care. It’s important to keep raising that awareness.
