Christine is mum to a 26-year-old service user at Cygnet Nield House, a 29-bed mental health hospital in Crewe.
This Carers Rights Day, she shares her story and what it means to now be a Carer Ambassador for Cygnet Health Care.
Since July 2023, our daughter has been a service user at Cygnet Nield House. Unfortunately the care our daughter needed couldn’t be provided close to home so we accepted a placement in an area unknown to us, 70 miles from home, onto a ward for women with a dual diagnosis of personality disorder and disordered eating.
For my husband Jon and I, we really believe she is in the best place possible on her journey of recovery. She is finally getting the physical and mental health support she needs, all under one roof. She is making progress at her own pace of which we are all benefitting as a family.
She has built trusting relationships with the staff there and they have really gone the extra mile for her. She is now able to engage with her treatment plan and has started to see a future for herself out of hospital.
It feels like we are getting our life back a little bit and I’m finally in a position to share my experiences and help others.
It was only when my daughter was admitted to the Cygnet Health Care service that I heard myself referred to as a carer for the first time. I never saw myself as a carer for my daughter, I was just a mum doing what mums did.
I still find it difficult considering myself a carer for my daughter. She is 26 years old now and before her mental health declined to the point of admission, she was working, owned her own house and lived a fully independent life with dreams and aspirations for her future.
I supported and continue to support my parents with their various needs as they get older. Considering their age, I found it easier to be viewed as their carer.
But accepting that I was a carer for my daughter meant I could receive support myself. I have a background in nursing and have worked for 35 years with children and young people in the community, as a school nurse.
Despite this experience and knowledge of how mental health can impact people, seeing my daughter struggle was something I felt ill-prepared for.
Watching someone you love struggle with their mental health can impact on your own mental health over time, you just don’t see it yourself. My husband Jon is incredibly supportive and we gain strength from each other. However despite this, I was too busy concentrating on my daughter and wanting to make everything better for her to consider support for myself.
The emotional impact was no easier for me despite being more aware of the support there was available.
When you care for someone, your own life gets put on hold. Making sure you have cancellation insurance on holidays, not booking them in the first place, being too worried to go too far, the phone ringing when out and saying number withheld, giving up work and constantly feeling like you are on call, just in case.
When my daughter first got admitted into Cygnet services, I didn’t feel able to talk to anyone about what it was like being a carer. I was totally exhausted due to the struggles to get her the right support away from the acute sector, worried about the transition, and the fact that she is 67 miles away from home.
In 2023, Cygnet introduced Expert by Experience Carer Ambassador roles. These roles – fulfilled by people with lived experience as a carer – help shape Cygnet’s carer plan and have the opportunity to improve how Cygnet interacts and involved loved ones.
Seeing how settled my daughter was becoming in hospital, I felt strong enough to take on the role and support others. Now my daughter has staff who understand and care for her in the best way possible. I finally know she’s safe and supported managing her ups and downs and that makes me feel reassured enough to put myself in a position to help others.
I share my role as carer ambassador with several others whose lived experience is very different to mine. We support Cygnet Carers Network, Cygnet Carer, Family and Friends Strategy and promote Triangle of Care and Carer Advocacy Service.
Personally, I identified the negative impact on service users of alarms constantly going off and as an improvement silent alarms are now being used at Cygnet Nield House. I recently hosted a Carer Stress Masterclass along with Matthew, another carer ambassador and am attending a face-to-face drop in for carers at Cygnet Nield House in November. I attend meetings to share my story and give a voice to carers across Cygnet.
If you aren’t used to mental health services, it can be really confusing and overwhelming, trying to understand the clinical language and know how to best advocate for your loved one.
It can be very isolating when your loved one is moved to an out of area placement, miles from home. I feel I have a lot to offer family members who are just starting that journey of navigating services and admissions and I can reassure other parents and carers to see that you are not on your own and support is out there.
My experience of Cygnet is that I have been involved at every step when appropriate with my daughters care. I have attended ward rounds, been listened too, challenged decisions and they have been very transparent. As a carer I have a voice but am respectful that at 26 years my daughter has her own voice too. Previously she’s not been well enough to advocate for herself but she’s now finding her voice and is more involved in what she needs and how her care plan should look. Together we are making a difference to the ward environment and she’s proud of my ambassador role.
As parents, we are so proud of how far she has come and that she’s seeing a future for herself. Although discharge is many months away, I’m hopeful that a bright future exists for her when she returns to independent living. We will take it one step at a time but she’s in the best place she can be at Cygnet.
She’s 26 now and I am enjoying being her mum. Not her counsellor, not her therapist, or indeed her carer. When she was struggling, it was a constant battle I had to help her get to the right place, she was too unwell to fight for herself. As her discharge gets nearer, it becomes more stressful but we feel supported both by the Multi Disciplinary Team at Cygnet Nield House, not forgetting her local case manager whose involvement is vital to us to all.
Now it’s time to start enjoying being Mum and Dad again.