‘Locked in’ Boy Meets is Hero Writer

A remarkable 10-year-old boy from Wiltshire, who learnt to communicate despite being ‘locked-in’ due to severe cerebral palsy, has met his literary hero – children’s author Michael Morpurgo – thanks to Make-A-Wish® UK.

Jonathan Bryan also has kidney failure, chronic lung disease and is oxygen dependent following a car accident when he was in the womb. He learnt to ‘eye talk’ using a spelling board when he was seven and has developed a reading and writing age beyond his years. Now, he too may become a published writer.

Jonathan’s teacher suggested he contact Make-A-Wish, the charity that grants magical wishes to enrich the lives of children and young people fighting life-threatening conditions, because he dearly wanted to meet his favourite author and loved hearing his stories read aloud – especially the book ‘Why the Whales Came’.

make a wish

His wish became a magical reality when Make-A-Wish arranged for Jonathan, his mum, his carer and his two sisters Susannah and Jemima, to travel down to Exeter from their home near Chippenham. On arrival Jonathan and his family went for dinner together and then headed to Exeter Cathedral where Michael Morpurgo was waiting to meet them!

His mum Chantal said: “Michael was only meant to be with Jonathan for half an hour and had to be cajoled out after 50 minutes by his agent as he then had a concert to do.  We went over to the cathedral for the concert, and then met Michael briefly afterwards, when Jonathan told him: “I loved it. You are compelling.”

Afterwards Jonathan said: “It was wonderful to meet my literary hero. The best moments during the wish were hearing Michael Morpurgo read my story aloud, being able to ask him my questions and Mr Morpurgo agreeing to write a foreword for my little book. The wish has given me lots of good memories and the impetus to put a book together. Thinking back on the wish makes me feel happy and excited.  Thank you for making my wish come true. I am meeting the head of an agency in London about possibilities for my book.”

Jonathan has since written to thank Michael, saying: “Hearing you read my tale was like sitting at the feet of my storytelling master; immersed in the richness of your narration we travelled the landscape of my silence together.”

Chantal added: “Meeting Michael Morpurgo was a dream come true for Jonathan, and it was a really special meeting of two writers.  The girls enjoyed meeting Michael too and it was lovely that they could also be included. Susannah, who’s seven, gave him a poem, and Jemima, four, did a drawing for him.”

Chantal began teaching Jonathan to select whole words with his eyes on the advice of a speech and language therapist who told her about the ‘eye talk’ method of communicating with alphabet boards.

After 18 months of sheer persistence and determination, he had a “breakthrough” and began spelling out words by laboriously selecting individual letters, numbers and punctuation marks.

The wish was filmed by production company Sugar Films for a documentary to be broadcast on CBBC in 2018 and Jonathan wrote about the experience on his blog here: https://eyecantalk.net/2016/12/07/magical-meeting/

More children than ever are turning to Make-A-Wish so every donation really makes a difference.  To make a donation, choose a challenge to take part in or find out more about our work, please visit our website here: www.make-a-wish.org.uk or telephone 01276 40 50 70

Here’s how we improve care for our most vulnerable

Mike Adamson, chief executive of the British Red Cross writes: I wanted to send you a note in light of our reiterated calls for more help for those in need of health and social care support

The long-term rising pressure on our health and social care system is perhaps inevitable given the combined pressures of an ageing population living longer with a range of needs, new expensive treatment options and budgetary constraints. It is a form of perfect storm, bound to lead to a plethora of real problems from hospital bed shortages and lengthy waiting times to the isolation of our society’s most vulnerable members. The past week has seen the spotlight shone on many of our system’s current failings.

This is an emotive subject, it’s about how our families are cared for when they are at their most vulnerable. In recent days the debate has been overshadowed by whether this constitutes a “crisis”, how much money has or hasn’t been invested and who’s to blame. However, out of that there is also now a growing consensus that something has to change to solve the problem and create a health and social care system that matches people’s needs and prevents them reaching the point of crisis whenever possible.

The health and social care systems cannot be separated. They are interdependent – if one is stretched the other feels it. The problem that a lack of social care is causing to the health system is well documented. Of the 193,700 hospital days lost to delayed transfers of care in November 2016, 35% were attributable to a lack of social care that means too many people have nowhere else to go for support at home.

Despite an increase in demand, at least half a million fewer people are receiving support than ten years ago. People are going without basic support with feeding and washing. Others are unable to access the transport necessary to get to their GP appointment. Through our work, assisting people in the gap between home and hospital, we see the long-term additional strain that cuts to social care are putting on the NHS.

Because of budgetary constraints, £4.6 billion was cut from adult social care between 2010 and 2015. At least £1billion extra is needed each year up until 2020 just to continue providing care at current levels.

However, we believe the solution is not just about pumping more money into the system. It also needs a culture change and a recognition that there are small things that can add up to big solutions. The danger is that people demand a big bang solution, whereas this will actually take painstaking hard-work and a joint approach.

Care logo

The culture change is about how the system works: our tendency is to work in silos between medical departments, community services, social care and the voluntary sector. We need to work together to see the patient in the round and start from what they need.

I remember watching as one of our volunteers sat for an hour with a woman, in her 70s and recovering from a hip operation, repeatedly asking “what do you need to get better”. She needed mobility aids, yes, but she also needed someone to help give her confidence to get back on the bus, to go to the shops, so she could start again to be self-sufficient. That’s the point we need to start at. A long term, person-centred solution, developed in partnership, across parties, professionals and other organisations is needed.

There are actually some relatively simple, smart interventions that could be made that would amount to a potentially dramatic difference to the whole system. We need to speed up access to medications and wheelchairs on discharge so people can leave hospital more quickly. We need to know people are going home to a safe place, that the heating is turned on and that they will be fed, so they don’t end up in hospital again. We are increasingly understanding the cost of loneliness on people’s health and the triggers for it. We need a society that responds quickly to help people get back on their feet again and a health and social care system that prioritises that.

The Care Act 2014 paved the way for the biggest reform of social care in over 60 years. For the first time, new duties and responsibilities to shift towards prevention were placed on local authorities. Yet, almost two years since it came into force, prevention budgets continue to fall. Rather than investing in services that prevent, reduce and delay the need for further support, with overstretched funds, local authorities are struggling to help those with even the greatest of needs. We’re fighting fires rather than preventing them.

Other ambitious initiatives have since been introduced, such as the NHS Five Year Forward View, sustainable transformation plans and the devolution of integrated health and social care budgets. But to really mean something, they need to be met with extra resources and a change in thinking that approaches this collectively as medics, carers and commissioners.

We welcome the Prime Minister asking for a review of care and integration policy. It’s an excellent opportunity to explore long term, person-centred solutions, and what is needed to see them properly implemented. If we can develop this in partnership, across parties, professionals and other organisations we could start to build a future in which our society’s most vulnerable people will get the care and dignity they deserve.

Long-term rising pressure on our health and social care system is perhaps inevitable given the combined pressures of an ageing population living longer with a range of needs, new expensive treatment options and budgetary constraints. It is a form of perfect storm, bound to lead to a plethora of real problems from hospital bed shortages and lengthy waiting times to the isolation of our society’s most vulnerable members. The past week has seen the spotlight shone on many of our system’s current failings.

This is an emotive subject, it’s about how our families are cared for when they are at their most vulnerable. In recent days the debate has been overshadowed by whether this constitutes a “crisis”, how much money has or hasn’t been invested and who’s to blame. However, out of that there is also now a growing consensus that something has to change to solve the problem and create a health and social care system that matches people’s needs and prevents them reaching the point of crisis whenever possible.

The health and social care systems cannot be separated. They are interdependent – if one is stretched the other feels it. The problem that a lack of social care is causing to the health system is well documented. Of the 193,700 hospital days lost to delayed transfers of care in November 2016, 35% were attributable to a lack of social care that means too many people have nowhere else to go for support at home.

Despite an increase in demand, at least half a million fewer people are receiving support than ten years ago. People are going without basic support with feeding and washing. Others are unable to access the transport necessary to get to their GP appointment. Through our work, assisting people in the gap between home and hospital, we see the long-term additional strain that cuts to social care are putting on the NHS.

Because of budgetary constraints, £4.6 billion was cut from adult social care between 2010 and 2015. At least £1billion extra is needed each year up until 2020 just to continue providing care at current levels.

However, we believe the solution is not just about pumping more money into the system. It also needs a culture change and a recognition that there are small things that can add up to big solutions. The danger is that people demand a big bang solution, whereas this will actually take painstaking hard-work and a joint approach.

The culture change is about how the system works: our tendency is to work in silos between medical departments, community services, social care and the voluntary sector. We need to work together to see the patient in the round and start from what they need.

I remember watching as one of our volunteers sat for an hour with a woman, in her 70s and recovering from a hip operation, repeatedly asking “what do you need to get better”. She needed mobility aids, yes, but she also needed someone to help give her confidence to get back on the bus, to go to the shops, so she could start again to be self-sufficient. That’s the point we need to start at. A long term, person-centred solution, developed in partnership, across parties, professionals and other organisations is needed.

There are actually some relatively simple, smart interventions that could be made that would amount to a potentially dramatic difference to the whole system. We need to speed up access to medications and wheelchairs on discharge so people can leave hospital more quickly. We need to know people are going home to a safe place, that the heating is turned on and that they will be fed, so they don’t end up in hospital again. We are increasingly understanding the cost of loneliness on people’s health and the triggers for it. We need a society that responds quickly to help people get back on their feet again and a health and social care system that prioritises that.

The Care Act 2014 paved the way for the biggest reform of social care in over 60 years. For the first time, new duties and responsibilities to shift towards prevention were placed on local authorities. Yet, almost two years since it came into force, prevention budgets continue to fall. Rather than investing in services that prevent, reduce and delay the need for further support, with overstretched funds, local authorities are struggling to help those with even the greatest of needs. We’re fighting fires rather than preventing them.

Other ambitious initiatives have since been introduced, such as the NHS Five Year Forward View, sustainable transformation plans and the devolution of integrated health and social care budgets. But to really mean something, they need to be met with extra resources and a change in thinking that approaches this collectively as medics, carers and commissioners.

We welcome the Prime Minister asking for a review of care and integration policy. It’s an excellent opportunity to explore long term, person-centred solutions, and what is needed to see them properly implemented. If we can develop this in partnership, across parties, professionals and other organisations we could start to build a future in which our society’s most vulnerable people will get the care and dignity they deserve.