Speaking out from within: the patient voice from inside NHS England
Sharon Howard, an administrative support officer with NHS England, explains why she is proud of the service she works for.
The NHS, 65 glorious years of free health care for all – it’s something to be proud of.
Working within the NHS, we are always reminded the patient is at the centre of all we do. But one patient voice we rarely listen to is our own.
Just because we are staff working in the NHS does not exclude us from accessing the services provided – we are patients too. But how often do we speak up about our own experiences of the NHS services we have used? Not very often.
I, for one, have a huge amount to be grateful for when it comes to the NHS. I am thankful and proud of the wonderful services, without which neither of my children would be with me now. For me as a patient, carer and employee, the NHS is highly valued. Here are my reasons for holding the NHS in such high regard:
My son was born 13 weeks prematurely and later developed Epilepsy, ADHD, Dyspraxia and Asperger’s syndrome. He has also suffered asthma, enuresis, bowel problems and growth/puberty delay. Now aged 20, and still suffering many of these problems, NHS services have saved his life many times and enabled him to have a good quality of life despite his illnesses.
My daughter was born five weeks early with a complex congenital heart condition. At just four days old she endured nine hours of heart surgery to correct three major defects. Several more operations followed as she grew up, and now aged 19 she is due to have her first heart valve replacement. Without the NHS she would not have survived.
My husband, sadly no longer with us (at no fault of the NHS I might add) was diagnosed with a brain tumour in 1998. Surgery swiftly followed and over the next 11 years periods of remission and recurrence were monitored and treated with radiotherapy and chemotherapy. Eventually palliative care was needed when no more could be done to prolong my husband’s life and he passed away peacefully in 2009.
I recognise, as we all do, that there is room for improvement in some areas of the health service and, as NHS employees, it is our job to help bring about that improvement. But I hope the story of the care given to my children and my husband demonstrates just how amazing things can be.
To cope with all that as a wife, mother and carer is hard enough for anyone. Factor in that I was just 16 when my son was born and you begin to wonder what effect this had had on me.
This is where things are not so good, for me there is one particular area of weakness where I feel the NHS failed me.
Around the time my husband died I had a massive breakdown. I had suffered recurrent bouts of what was dismissed as low level depression since I was a teenager, never treated, as result of a few traumatic experiences. Since the birth of my son traumatic events continued to feature heavily in my life and I coped, to a degree.
The passing of my husband brought all this to a head and after years of asking, pleading unsuccessfully for access to services to help with my mental health. My breakdown finally triggered a referral for assessment. I was diagnosed with Borderline Personality Disorder in 2010.
However, what you would expect to trigger access to therapeutic services and support to enable me to recover stopped at a brick wall. Nothing happened.
By now I was working in my first role in the NHS. I hoped this might help me gain access to services I needed, but it didn’t. I was on a waiting list for NHS psychological therapy services that never materialised.
In 2011, after another breakdown that forced me to leave work, I gave up waiting and begging for NHS services and sought out a private therapist to help me get well.
After 18 months out of work and spending money I couldn’t afford on weekly private therapy sessions I was well enough to return to work, and I took another job in the NHS. I’m still working in the NHS now, although in a different role.
I have still not had any NHS help for my mental health and still pay privately to see my therapist to ensure I don’t become unwell again.
The thing is, there is no health without mental health and despite this fact mental health services are still one of the greatest weaknesses of what is on the whole the best healthcare provision in the world – our NHS.
The stigma and discrimination attached to having a mental health condition is, I believe, one of the main reasons that mental health services are lacking. People are afraid to speak up and admit they have a problem, fearing losing their job, friends, family and more. They are afraid to ask for help because of the way they will be treated, being discriminated against, being ‘left out’, feared and bullied. These, among other things, are all common experiences. And if, like me, they do ask for help they are dismissed as clearly not unwell enough to need it.
A lot of people tell me I shouldn’t talk so openly about my mental health problems because it may affect my job. I know they are right: I’ve suffered work discrimination first hand, in the NHS. But, I will keep on speaking out because someone has to. In doing so I hope it will encourage others to speak out too.
By speaking out within my team, my organisation, my NHS, from a position where I have experienced so much personally, and working in a team where influencing change and improvement in the NHS is a key function of our work, I hope my voice is heard.
I hope NHS mental health services get the investment and improvement that is much needed. I hope that one day I can say I am as proud of these as I am of the rest of the NHS.