Mental Health is at the forefront of peoples lips these days and its become the new buzzword in the news, and rightly so. Studies and articles on men’s mental health, women’s mental health, children’s mental health, suicide, mindfulness, post-natal depression and post-traumatic stress syndrome, they all get wonderful coverage to raise awareness and end the stigma. It’s fantastic to see, and yet, as with most things there always seems to be a group which gets overlooked. Carers and people with lifelong conditions and disabilities seem to be left behind in terms of acknowledgement of mental health conditions.
I have a wonderful 5-year-old daughter who is disabled and has several serious health needs which in times of crisis, requires me to be strong, wilful and resilient. When you have been in battle mode for several years, fighting from all corners against things like poor health, difficult pregnancies, homelessness, DLA tribunals for a child, access to appropriate education and raising a small family its evident the cracks will begin to show.
In the last 5 years I have gone through cycles of post-natal depression, anxiety, post-traumatic stress and depression and breakdowns in my mental health. Not overly surprising given the rollercoaster we have been on. The last year has been a healing one for me and I have found my strength and started speaking out about listening to parents of disabled children, collaborative care with health professionals and trying to highlight the mental health needs of parents and carers of disabled children. In February this year I was asked to give a speech at the Rare Disease Day parliamentary reception at Holyrood about our experience of our diagnostic journey.
I spoke about our journey, what went well and what didn’t and fundamentally what needs to change in Scotland in our health service, so things improve for those asking for help. The speech was incredibly well received by the politicians, professionals, and most importantly the fellow parents who were in attendance who recognised our own journey and feelings as their own. Following on from this I emailed a copy of the speech to our First Minister Nicola Sturgeon as I felt it important that she be aware of what families in Scotland must contend with. She asked me for a meeting in her constituency office in April.
As part of my preparation for this meeting I devised a survey asking parents and carers their experiences of the diagnostic journey, how difficult it was to be believed and how their mental health was affected. I was completely overwhelmed by 273 responses in just a week, I had to close the survey to allow me sufficient time to collate the results and discuss them with Nicola. Armed with my results and a friend for moral support (also a fellow parent of a disabled child and good friend) we went along to Nicolas office with the idea that we wouldn’t go kicking the door down to be heard as it may already be open. We couldn’t have been more wrong.
By her body language it was evident that she wasn’t interested in hearing how the disabled families in Scotland are struggling. She sat slouched back in her chair with her arms crossed and refused to take the results off me, so I insisted. She said she wasn’t interested in statistics but rather stories. I told her of some of the responses of the survey. The family whose child was removed from their care for 9 months as the child difficulties were deemed to be attributed to neglectful parenting only for the child to be diagnosed with a rare genetic condition, returned to the family and not a single apology made. Or the mother who spent 6 weeks as an in patient in a mental health hospital due to a breakdown because she was not being listened to about her child’s struggles. Or my own story which includes being accused of having a mental health condition and projecting symptoms on my own child for attention! I told her that of all the respondents 79% reported that their mental health had suffered as a result of their experience of their families’ diagnostic journey. That’s a powerful statistic yet apparently its still not enough for our first minister to want to help.
She then told me there wasn’t really anything she could do to help me as I wasn’t one of her constituents, that she would refer me to my local MSP (who thankfully is amazing) or if I wanted to go away and re-collate the information in to stories that she would have another look at it. She done the bare minimum to appease me and get me out of her office.
So, this begs me to ask this question. Isn’t Scotland Nicolas Sturgeons Constituency? As Scotland’s’ voted for an appointed First minister it should matter where our postcode is if it’s a nationwide issue. The respondents were certainly spread from the Highlands and Islands right down to the bottom of the country. Mental health doesn’t understand borders or constituencies, and yet there is most definitely a need for something to be done to support those who support some of the most vulnerable and underrepresented people in our country.
Scotland has the ability to lead the forefront in supporting carers, and not just by slightly increasing carers allowance, but by training health professionals the power of the parent voice, by ensuring our health service has a proactive spend when it comes to helping rather than a reactive spend. Listening to that mother who had concerns and helping her at the start would have been exponentially cheaper than her 6 week stay as an in-patient in hospital due to a breakdown. By promoting collaborative care. It’s not parents versus health professionals, it should be working together to ensure families are supported physically and mentally.
So, here is my request. I want to gather stories of peoples’ experiences with mental health as part of the caring role of a child with additional support needs, peoples’ stories of not being supported or listened to, the treatment of parents who try so hard to advocate for their child best interests yet get repeatedly turned away. If you are happy to share your story to the public, please get in touch as I want to create a film capturing what we go through. I can’t guarantee Nicola will take notice because if it’s not about Scotland’s Independence then it doesn’t seem to cross her radar. (For the record I voted Yes but that doesn’t mean that should be her sole focus while families crumble under the weight of being in constant battle mode!) So, get in touch lets get our stories out there. Someone will listen, but we must tell it first.