12 June 2025

I am Ann, Chair of the Carers’ Council for the Trust, and locally I co-chair the Service Users and Carers Involvement Forum in Hillingdon. I thought I would write a small piece as part of Carers Week (9th -15th June) to share what it is like to be a carer.

I am a carer for my son with treatment-resistant paranoid schizophrenia, or TRS, and my husband who has vascular dementia. Caring is very different for various reasons. Caring for my son is very different from caring for my husband. Many care for friends and neighbours, so that is another dimension.

Many of us do not set out to be carers, it is thrust upon us; sometimes overnight and sometimes it is a gradual thing. There is no training or job description. No terms or conditions and no financial reward to follow, and most importantly you cannot give notice.

My son was a lively fun loving boy, he enjoyed fishing, art and most importantly was an integral part of the family. He completed an apprenticeship in Fine Arts Restoration, he worked on the Banqueting Hall Whitehall, Windsor Castle and many other projects. He was no angel and got up to usual things teenage boys do, and as he was leaving his teenage years I thought he would settle. I had no idea he was becoming mentally unwell. Finally I realised what he was doing was not normal for him. My GP was brilliant and supported us all as a family (because it does affect the whole family). We were then told our son needed more professional help and were referred to Mental Health Services.

We all have life changing events that are etched in our minds forever. Mine was 22nd March 2001 at 10 to 2 in the afternoon. It was a lovely day, the sun was shining; it could not be a more beautiful day. Earlier my husband and I had enjoyed some time in the garden enjoying our display of Spring bulbs and enjoying our day off from work. The consultant had come to meet our son, and after spending a long time with him, the consultant came into our front room and in a matter of fact way said, "Your son has paranoid schizophrenia, bring him to the clinic on Tuesday and we will start treatment." and left. I felt like a sword had been thrust through my heart - my husband and I just held each other. The weekend was endless. My son was really unwell and had no concept as to what was happening. It had a profound effect on the whole family. I felt I had to shield his 2 brothers and sister as I only knew what I had read in the papers.

We eventually got him to the clinic where he was sectioned, and so began his life in services.  I never thought I would be speaking about this 24 years later. In these 24 years he has been in hospital for 14 years on and off, in every part of the Trust except Milton Keynes (my husband has) so I can speak on the different services offered and my experience of being a carer.

Over the years I have felt many emotions which you may be able to relate to. Caring for someone with mental health is very different as you support, encourage and empower them to be the best they can be. It can be exhausting both physically and emotionally. 

When my son was first diagnosed, I felt a sense of loss for my darling boy, the boy that loved me (not so much now). His condition changed him, he needed answers – ‘why him?’, ‘I must have done something to him to make him unwell’. I could not answer his questions so he got angry with himself and of course me. At times I did not recognise him. I felt guilty - was it something I had done? Could I have done more? A sense of helplessness. He would cry out for help and I felt inadequate as I could not take this hurt away from him. 

Many of you know me through my work within the Trust and I do love to chat. I am happy to chat, discuss and share my story with healthcare professionals. But I do not share openly outside of this - even amongst my friends I don't share. I am not ashamed of my son and his condition, but I want to protect him. Even today people make unrealistic judgements of him which is hurtful both for him and myself.

As a carer it does interfere with my life. It is isolating and lonely, especially now as I cannot share with my husband in the same way as I did in the past. But I am fortune - I run a small support group for carers who care for people with long term complex mental health issues on a Wednesday (hence its name, Wednesday Club). A safe space to meet other carers to share and offload. We enjoy tea, coffee, cakes and biscuits - a great saviour of the world and a place to relax away from the busyness of our caring role. 

My other kids are there for me along with my brother and sister and their families, so it is not all bad.  The time from midnight to 3 in the morning is the worst, but I wake up in the morning and try to remain positive and thankful for what I do have. My garden is my sanctuary, along with my dog Pickle. 

I was invited to sit on the Carers’ Council at its conception in 2010; the Trust identified the need to support and improve the Carers role. Over the years we have worked tirelessly to improve the Carers' lot, give them a voice, a platform and most importantly the respect they deserve. We have co-produced lots of very useful booklets and information along with service users and staff. We organise conferences which is a platform to discuss current thinking and more importantly to bring carers together to share.  We have a lifetime of experience about the person and we all have the same aim. That is for the person in the service to get the care they need to lead a worthwhile life with the challenges they face.

So what can you do? Please engage with carers, attend the Carers’ Awareness Training, and follow the standards of the Triangle of Care. I would love your comments, so please share your thoughts.

I will end by saying a big thank you to all the other members of the Carers’ Council and the Involvement Team, Lucy Palmer and Grace Stratford-Levy. Their commitment and dedication is invaluable.  They have allowed us to bring our agenda to the fore and the programme for Carers' Week is due to their hard work.