I’ve decided to start a new blog to share my personal journey and experiences at…
On Tuesday 7th February 2017, I attended my third event at the House of Commons for Together for Short Lives, with the theme of #forthe49000. The event was hosted by Stuart Andrew MP. A fantastic day was had by us all. I attended along with my Assistance Dog Molly, my mum, my nurse and my Uncle Ray who drove us. We had a very enjoyable day, got plenty of photos, and I got to see lots of friends and people I know through my work and the charities I am involved with, as well as to meet two other Young Avengers (young ambassadors) who I know through working with them on projects, but had not met in-person until Tuesday.
This year’s theme was the launch of the All Party Parliamentary Group for Children who need Palliative Care, as well as to propose seven key areas for the Government to invest in children’s palliative care. The event was well attended, with parents of children with life-limiting conditions, young adults with life-limiting conditions and hospice and palliative care professionals being joined by over 50 MPs and Peers.
Barbara Gelb OBE, CEO of Together for Short Lives, proposed the following calls that she asked of the Budget to invest in children’s palliative care:
- Adequately fund children’s palliative care to meet demand.
- Giving young people dignity and respect – bridging the cliff edge in care between children’s and adult services.
- Supporting Managed Clinical Networks (MCNs).
- Ensuring nursing care today and tomorrow.
- Preventing family breakdown.
- Lifting the baby benefit bar.
- Care and compassion in bereavement.
|(c) Together for Short Lives|
At the event, there was a display showing the amount of equipment needed by many under threes with life-limiting conditions, including supportive car seat, specialist buggy, oxygen, ventilator, gastrostomy supplies and feed, medication, suction, spare supplies and more. These children desperately need an adapted vehicle in order that they can leave the house, but the baby mobility benefit bar means they cannot claim the mobility component of Disability Living Allowance until the child is three. This leaves families trapped at home as they cannot claim the DLA mobility component that would allow them to fund a specially adapted vehicle to accommodate the child’s needs and equipment. Some of these children will not even live long enough to claim the benefit. It needs to be lifted that young children with complex, intensive, specialist needs can receive Mobility DLA and fund a specially adapted vehicle to allow them to leave the house, enabling them to attend appointments and meetings, but also have quality of life for the whole family, enabling them to leave the house for outings and days out. It’s vital the baby mobility benefit bar be lifted – please support the campaign. Other areas covered included improved funding for and access to short breaks, vital to give carers a break from caring, to allow them to rest and recharge their batteries, and to enable family time with other children or as a couple without the child’s care needs to worry about or work around, as well as improving the ‘patchy’ care and the postcode lottery when it comes to the funding of children’s palliative care and related services.
Parent Rachel Thompson shared her story, as her son, Frank, has Late Infantile Batten Disease, a rare, incurable, neurodegenerative condition, robbing Frank of his mobility, his speech, his sight and his ability to swallow and eat safely. He is immobile, suffers from dementia, is fed through a tube and needs assistance with breathing – his care is 24/7, 365 days of the year. He has a life expectancy of between 6 and 11 years old. Frank and his family are supported by a children’s hospice, where care is for the whole family – support for Frank and his parents and his siblings. Frank’s story epitomises what palliative care is; looking after Frank and the specialist, complex nursing needs Frank has, quality of life and quality of care, preventing unnecessary hospital admissions and the ability to step-down from hospital to the hospice, support in accessing equipment and services, support with fighting for care packages, care around the clock, someone they can call upon at any time for advice or support, the desperate need for – and benefit of – respite/short breaks for the parents, care for the whole family from diagnosis and which will extend to bereavement care when the time comes, quality end of life care when needed – a whole-family approach to care. Rachel’s story was very emotional and shows the importance of the work of children’s hospices and paediatric palliative care, and of the work of Together for Short Lives in representing the 49,000 children and young people with life-shortening conditions in the U.K.
It is an honour to be a part of Together for Short Lives, who I have been working with for almost four years now. Parliament holds a very special place in my heart because it is there that my charity work all started, when I gave a speech for Together for Short Lives – my first speech (ever) and the first bit of charity work I did – on the transition period between children’s and adult services. I was one of the original Young Avengers and became part of their then-newly formed Transition Taskforce. It was wonderful that I got to meet two fellow Young Avengers (young ambassadors), Junior and Leah. Junior and I have crossed paths so many times with our work, both through Together for Short Lives and the Open University Sexuality Alliance (OU SA), but we had never met face-to-face before.
Molly was a little star at the event – well, a big star. She was the Belle of the ball, getting lots of fuss, in fact she was more in-demand than I was! She gained many friends and admirers at Parliament. She did me so proud, and her tail did not stop wagging the whole way through the event. She certainly was a big attraction, and just lapped up being centre of attention. In true Molly style, she thought every round of applause was for her! She was such a good girl doing exactly as I asked, and was very taken with Junior and Leah, doing paws-up on their wheelchairs so they could say hello.
All in all, it was a fantastic event, it was great to catch up with the people I have met along the journey with my work, highly influential people, and those who have had a big impact upon my work, and this time, for them to be able to meet Molly too. I am so fortunate to have been invited to Parliament for the third time and to have so many wonderful experiences.
Also, Baroness Campbell of Surbiton (Jane Campbell), a crossbencher, popped into the event. I only briefly spoke to her, and she gave me some words of advice that will ring in my ears in future. She told me not to let professionals dictate campaigns, decisions and how things are run because they don’t have experience; we, as disabled people, must be the ones steering campaigns and speaking up. I will always remember this – because she is right, it is us as disabled people who must speak up for ourselves and campaign for our needs and rights. If you don’t know about Jane, I suggest you read her story on her website. She’s an amazing woman who was instrumental in the campaigns that led to the creation of the Disability Discrimination Act 1995, and has campaigned, run and managed charities and organisations including being a Commissioner in the now-defunct Disability Rights Commission. She is currently a crossbencher in the House of Lords. She is an inspiration to me in many ways, not because she’s disabled, but because she used everything she has to advocate, create change, campaign and make a difference. She is a role model to me, she shows me that anything is possible if you work hard, and shows how powerful our words and actions are if we use them to the fullest extent. So to be able to speak to her, albeit briefly, and to have her words forever in my mind, was a massive boost. I will go forwards with renewed determination.