SWAN UK member Liz Toft spoke at a meeting for the All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions. Here she shares her experiences of social care for her son Joshua who is undiagnosed.
I’m starting my account following our second social care assessment: following an initial assessment that included inaccurate facts and inaccurate personal information; following an assurance from my social worker that ‘this time you will be granted support’; following hours upon hours of form filling and emotional stress. At this point, my application for direct payments was, again, denied.
My social worker sat down with me to explain the decision, saying, ‘the computer system we have to put your application through said ‘no.’ The computer said ‘no’. In addition, she continued, ‘my manager can’t see that, in your current situation, you face anything that any other parent doesn’t have to deal with.’
This is Joshua.
He smiles, he laughs, he can scroll on an iPad to find his favourite nursery rhyme, he can shuffle on his bottom and even, when in good health, chase you on a trike. Joshua will be four one month today. In those four years, Josh has experienced surgery, MRI scans, ultrasounds, x-rays, blood tests and other investigative and therapeutic appointments that mount into the hundreds.
He hasn’t taken his first independent steps, he hasn’t uttered his first word, he hasn’t eaten his first meal and he hasn’t slept through the night or spent a night alone. As he has an undiagnosed, unknown condition, I don’t know if he will.
What I do know is that he and I share an unbending determination (often considered stubbornness) that means once we have decided on a goal, we will pursue it, pretty much relentlessly. However, what I have also learnt over the last four years is that in order to reach our goals, often even the most mundane of day-to-day domestic goals, we need support.
Overnight, Josh is fed by pump, through the gastrostomy in his stomach for 11 hours. He is attached to a tube that he frequently becomes tangled in and is disrupted repeatedly by reflux and vomiting episodes. This explains why he has never slept through the night and I have never been able to leave him to sleep independently. During the day, he is fed blended food through his gastrostomy using a syringe. This is delivered by hand every couple of minutes for about an hour in order to slow the rate and avoid reflux and vomiting episodes. He is mobile – an impressively speedy bottom shuffler – but lacks any verbal understanding, which obviously presents many dangers and means he must be very closely monitored at all times.
I am a single mother and if it wasn’t for the support of my parents, I would not be able to work. I love my job as a teacher and benefit from its challenging yet rewarding nature. During my working days, Josh attends a nursery, but neither he nor the nursery is equipped to cope with the, otherwise typical hours of 7:30–17:30. My parents deliver his morning medication and tube-fed breakfast, take him to nursery for 10am, pick him up at 15:30 and deliver his evening feed. My mother is 75 and has a pacemaker. My father is 71, has recently undergone major knee surgery and in the last month been diagnosed with a, thankfully benign, but never-the-less worrying, brain tumour.
Everything I have shared with you goes against my naturally, quite private nature. When I first considered applying for social care, I was worried about the emotional impact of sharing and being judged on my private life and, as I saw them, ‘failings.’
However, I want to work and pursue a career and I cannot rely on the continued support of my elderly parents. I was hoping to receive direct payments that I could use towards employing an outside agency to assist in the morning and evening care for Josh. Sadly, I now understand that my initial worries about applying for social care were naïve. I had feared an invasion into my privacy and a lack of understanding of my situation. This fear was realised when I was sent the assessment form to review and there were not only errors in the medical information provided about Josh and about the professionals we work with but also false and upsetting information about my wider family had been included. My social worker apologised for the unnecessary emotional distress it caused me and assured me that a second review would result in my application being approved. As outlined at the start of this speech, it wasn’t.
But more importantly, I have learnt that my initial fears were irrelevant. The real fear is that the social care system (as I have experienced it) ignores the individual and each unique situation.
The final decision about my life and that of my son’s was made by a computer system. A system that cannot account for absolute unknowns such as undiagnosed conditions.
With a diagnosis and a prognosis for the future, it would unquestionably be easier to fill forms and tick boxes that would lead to social care decisions. But we have neither diagnosis nor prognosis; Josh and I have these experiences and the unknown.
To find out more about the All Parliamentary Group on rare, genetic and undiagnosed conditions visit: geneticalliance.org.uk/appg.