Carers Week 2024

I’ve been a user of mental health services on and off for more than 20 years. I’ve  also been a carer for my (now adult) daughter who is autistic and has mental health problems for most of that time. And I’m also now a carer (along with siblings) for my Dad, who has both Alzheimers and vascular dementia.

Using services and caring for others who use them at the same time is not an unusual experience but it is rarely acknowledged.  Personally I’ve found it to be a double edged sword. I sometimes think that my own experiences of mental ill-health and mental health services have made me supremely qualified for this role.

When my mother died from cancer I was the only one in my family who understood why she did not want treatment and who could listen at length to her talking about her wish to die as soon as possible. As someone who has lived with suicidal feelings for a long time I understood her ambivalence to both live and death at that point in a way that no one else did.

When my father was diagnosed with dementia and other family members had no idea what this meant I was able to step in both practically and emotionally to try to prepare them. Most of the knowledge I brought to that situation came through years of service user involvement, which has involved working regularly alongside with people with dementia and their carers.

Caring for my daughter is much more complicated. At what point does a parent become a carer? I didn’t really regard myself as a carer until she was an adult and yet she was unwell from the age of 7 and with CAMHS from 14-16. It was only when she became unwell again as an adult, during the pandemic, that I began to think of myself as a carer. My mental health suffered hugely at that time, both from the sheer effort involved in caring for her, but also due to the realisation that I might have to be her carer indefinitely. We are both in a much better place now, thanks in large part to therapy that we both managed to access via phone during the COVID lockdowns.

Services acknowledge that many carers develop mental health issues as a consequence of caring, but there is very little recognition of, and no support for, long-time service users who are also carers. Caring for family with serious illness inevitably has an impact on our already fragile mental health and yet we often fall between primary and secondary care, which means we are left to sink or swim.  Those of us who work with service providers as Experts by Experience often find that we are excluded from EBE carer groups because we also identify as service users -  I’ve been told many times that I can’t be both, I have to choose which identity is more important to me, and/or that my participation in a carer group would make other carers uncomfortable.

For Carers Week last month the theme was ‘Putting Carers on the Map’;  I would like to acknowledge the work of all carers, but with a  special shout out to those who care while also managing their own mental health issues. I hope that going forward we can notice and pay some attention to service user carers and put them on the map.

Helen Leigh-Phippard