‘Every centre should have mental health support’

Written by Jessica Bomford, May 19, 2023

When Amy’s baby son was unexpectedly diagnosed with an extremely rare genetic bleeding disorder, she mentally shut down through fear for his future.

After experiencing nosebleeds, rashes and bruising, Amy’s son Logan was diagnosed with Glanzmann thrombasthenia (GT), a platelet disorder which affects only about 150 people in the UK. The condition is managed with on-demand treatment and platelet transfusions.

Amy, who is a mental health nurse and a trustee of the Haemophilia Society (THS), was stunned by the implications of Logan’s diagnosis. She said: ‘I felt horrendous guilt that I had given this condition to him which was going to ruin his life. I was scared to touch him because to do so would bruise him. I shut down and had a mental health relapse.’

Logan’s diagnosis came in the middle of the Covid pandemic, increasing the family’s isolation and concern.

‘The psychologist helped me reframe my worries by realising that there’s no such thing as perfect and that I am the best person to care for Logan.’

In some ways, Amy feels that her professional background made it more difficult to accept she needed help. She said: ‘I’m a mental health nurse, so I’m not meant to have bad mental health. I felt asking for help was a weakness.’

Amy received perinatal support from a mental health nurse and a psychologist, who helped her identify ‘mummy issues’, such as her desire to be a ‘perfect’ mum and her fears about accidentally hurting Logan. She said: ‘The psychologist helped me reframe my worries by realising that there’s no such thing as perfect and that I am the best person to care for Logan. I came to see that if I caused bruising through holding him, I was not hurting him, but giving him the love that he needs. The nurse helped me put this into practice.’

Unfortunately, Amy’s psychological support ended after a year and she faced an 18-month wait for more sessions. In the meantime, she attended an event organised by THS and started to see a way forward using self-help. 

Amy said: ‘I attended a Newly Diagnosed Weekend and got chatting to some of the Youth Ambassadors who really helped turn it around for me. I saw them living their lives with a bleeding disorder and it gave me confidence to feel that we could get Logan through this, that he would survive.’

Ensuring that people with a bleeding disorder have access to mental health support, as well as their families, is something Amy feels very passionate about and is keen to highlight as part of Mental Health Awareness Week. 

She said: ‘Every haemophilia centre should have a mental health nurse. Not everyone will need support all the time, but it needs to be there at the points in our lives when our existing networks aren’t enough. It is really important that mental health is not overlooked when we’re considering physical health. There’s so much more that needs to be done.’