Thursday 27th November 2014 ~
Today I went to the children’s palliative care conference “Leaders of Care – for equity, effectiveness and efficiency in children’s palliative care” run by Together for Short Lives to give a speech with my hospice nurse on transition. Despite feeling rough and struggling with my ever worsening breathlessness, I delivered my speech and I think it got the message across, helping professionals to see their work in action when things go well, and also where things can go wrong and how they could have been improved. I received lots of support and answered questions and I also learnt a lot. We left at lunchtime as I felt poorly but enjoyed it and am glad I was able to speak today. My speech is below for you to read and please use quotes and excerpts or share the whole thing as you need. I have to say a huge thank you to my hospice nurse Bev Barclay (The J’s Hospice) for giving me opportunities and to Barbara Gelb, Katrina McNamara and Julia Hodgson of Together for Short Lives for all the opportunities they have given me. They have enabled me to make a difference and given my life a purpose.
“The Other Side of Transition”
It’s so easy when thinking of transition to only think of the medical implications: new doctors, new teams and less support staff, having to start your story again from scratch and trying to condense it to fit the time you have with your new professionals; but we mustn’t forget about the other side of transition. Education, employment, relationships and independence are huge factors to consider in the transition of care from children’s to adult’s services. The transition can be a huge leap, especially if done poorly, and the impact it has on the young person’s life can be monumental. They need to be supported to take on the new responsibilities of managing their care and making decisions, but also to be supported to be as independent as they can – or as much as they want to be.
My medical transition did not run smoothly and varied greatly from hospital to hospital. Suddenly I was discharged from children’s services and had to start again with new, adult consultants. I went from being on a children’s ward where my mum could stay with me 24/7 and was making decisions with me, to being on an adults ward in a bay with 5 dementia patients, my mum only allowed in during visiting hours. This left me to make decisions for myself as my mum wasn’t able to be there when the doctors came round and because I was now deemed to be an adult, I was expected to make the decisions myself. There was no preparation. Perhaps naively, we hadn’t given any consideration to the fact that, when I turned 16, I would be admitted to adult wards. I have given a great deal of thought of how this transition could be improved. A key worker, perhaps one in each hospital, could be appointed to help both the young person and each hospital ward and staff deal with this transition. The staff could be briefed about the young person and asked to be flexible, extending visiting time, especially allowing parents to be present when doctors visit. This key worker could also be available during the young persons stay, talking through any concerns they may have – a friendly face helping both the young person and the adult ward to accommodate them as they make this transition. This would have greatly enhanced my transition rather than what became a huge, scary leap into the unknown.
My social services transition was vastly better. About a year before my transition began my children’s team started preparing me, talking me through the process and answering any questions I had. At this time I was introduced to the transition social worker who would take over my care and eventually help me transition over to the adult team. We had many meetings with both my child social worker and the transition social worker, allowing me to get to know the people that would take over my care and allowing them to get to know me. The child social worker and transition social worker also communicated often, so they were prepared and knew of my needs making sure they were well equipped to take over my care. The transition itself was very smooth, and any concerns of mine were addressed along the way. It went forward at a pace I was comfortable with and I was supported throughout the process. Recently I transitioned over to Continuing Health rather than adult social care, and again the transition was smooth. The transition team had stayed on board a lot longer than they should have to give us continuity of care and to save me from having to start again with an adult social worker, only for a a few months to a year later to change over to Continuing Health. All the members of each team ensured that my needs were at the forefront of their minds which created a good working partnership based on knowledge and trust.
Though I appreciate not everyone is enthusiastic about their schooling, education is extremely important to me. I love learning and was aiming for a career in medicine, even when disabled, but I became too unwell. I still favour a textbook over a novel any day! My senior school were extremely unsupportive when I became ill in 2008 aged 14. We had to fight for me to continue my education – despite it being compulsory to the age of 16 (now 18). My mum arranged meetings with the school Special Needs Coordinator and made several journeys to school each week to collect work for me which never materialised. Eventually the Children’s Support Services – who we had to contact ourselves as my school wouldn’t – stepped in and provided the very best education in the allocated six hours per week I was allowed. Without them I would not have received any tuition. I was desperate to learn, but was being penalised because I was sick. Had I been expelled there is a very detailed process the school would have been legally bound to follow immediately to provide me with tutoring through Children’s Support Services, but I missed a whole term of Year 9 because my school couldn’t – or wouldn’t – fill out the necessary forms. Fortunately with the help of the excellent CSS tutors I completed my GCSEs in 2010 at the same time as my former peers. I achieved an A*, three As, two Bs, one C and two Distinctions. It took a lot of hard work on my part, but as I said, I love learning.
Unsurprisingly, I favoured a new start in sixth form rather than staying at my school. I chose a college called SEEVIC close to my home and it was the best decision I’ve ever made. At the beginning of Year 11 we contacted the college. The staff could not have been more welcoming and supportive. We had meetings with the Learning Support/Special Needs coordinator, a tour of the college, I met some of the tutors, we were introduced to the college nurse and I was assigned a Learning Support tutor to help me with anything I needed. My timetable was arranged to suit my needs – I was studying Biology, Chemistry and Applied Science at A Level – and a copy of my support plan was given to each of my tutors. Everything I needed was put in place, with a scribe in every lesson of mine to write for me, to make notes when I was unable to attend and to help me with practicals and experiments. They also provided an experienced tutor to come to my home for an hour once a week to help me with any work I may have missed or just for any additional help I required. Unfortunately I became too unwell after two terms to continue with my education, but my time at college was a pleasure thanks to their commitment to providing all their students with the best education and supporting them to reach their potential.
Friendships through the teenage years are complicated enough. Hormonal changes, the opposite sex, fitting in, being the ‘same’ as your peers, having the right clothes, the right accessories, the right body image. If you throw being ill into that mix and not attending school – friendships become an impossibility. I lost all but one of my friends. Losing my school friends hurt me the most. They were supposed to be my friends, but now I wasn’t worthy of their friendship. I think, had my senior school allowed me to come in for social times, not necessarily focused on lessons alone, it could have made a big difference to my relationships with my friends. Once I was unable to go to school, it was like I didn’t exist at all. Put it this way – I only got one letter after I became ill, and that was a letter inviting me on a school skiing trip. I only appeared in our yearbook once, and it was my school photo from Year 9 – they hadn’t even bothered to ask for an up-to-date photo – and nobody signed my yearbook. I didn’t appear in the film of everyone in my year. I just didn’t exist, and I think this pushed my friends and I even further apart. I’m friends with many of my peers on Facebook, but rarely does anyone get in touch directly – and the very few people that have got in contact were not close friends. I’ve got lots of friends online, I’ve built up a huge support network of people of all ages and from all across the world. I’ve got a lot of friends that are my age, but we are united by our illnesses rather than common interests and we don’t have a normal friendship – but it is unlikely I will ever meet them in person.
Relationships are extremely important to unwell and disabled young people. It’s easy to forget that we’re still people, with the same wants, needs and desires, and that just because we are unwell or disabled doesn’t mean that we only want to have a relationship with someone who is unwell or disabled like us. Love is love, regardless of age, race, sexual orientation, illness or disability. Most people with illnesses and disabilities, including those with life limiting, life threatening and terminal conditions want to have a relationship and to be loved – myself included. Our time might be limited, but that doesn’t mean we sit and wait for the end to come. We want to live life to the full and do the same things as everyone else. We all want to find that special someone. A relationship may or may not include a sexual element; this may be very difficult for someone with disabilities. Society does seem to view sex with illnesses and disabilities as a taboo subject, but we all have the different wants and needs. Some want to have children, though their condition may prevent this. Sex education and sexual health support needs to be improved for those who are unwell and disabled, we need support and advice just like anyone else might. One thing is for sure: we all want to be loved.
Our desire to live as normally as possible also extends to employment. I had assumed I would have a career in medicine and fought for as long as possible to gain the necessary qualifications to go to university. Though I now appreciate being a doctor is out of my reach, I would still love to find some gainful employment. I hate relying on benefits, and I know many others feel the same way. Employment is not possible for all sick, disabled or life limited young adults, but for those who are able there should be the support in place to allow them to work – even if it’s only part time. I may not be able to work, but like many chronically ill and disabled people I do a lot of voluntary work, in my case in the form of writing and speaking for charities. I am involved with a number of charities now and have even spoken in Parliament. The organiser of today’s event, Together for Short Lives, is one of the charities I write and speak for, and they have given me a lot of opportunities. Young people, even those whose time is limited or who have learning disabilities, can benefit from the responsibility and feeling of fulfilment of having a job.
Transitioning from being a child to being an adult is difficult for everyone. When you throw in illness and/or disability, it just makes it more complicated. A lot of life limited children don’t make it to double figures, let alone adulthood, but more and more sick and medically complex children are living into adulthood thanks to medical advancements and these young people need to be supported in all aspects of their lives. If every young person whose life is complicated by illness or disability is met with flexibility, sensitivity and understanding, this will give them the opportunity to flourish and become the best person they can be.