Our vision for Cambridge Children’s Hospital is to be ‘a hospital without walls’. This means, where appropriate, a child or young person will be cared for in their own community, close to friends, family and school.
In June, Helen Whately, Minister of State for Social Care, and Sir Chris Bryant, MP for Rhondda, visited the Cambridge Centre for Paediatric Neuropsychological Rehabilitation (opens in a new tab) (CCPNR) to hear from clinicians, parents and patients. A representative from the Child Brain Injury Trust (opens in a new tab), which works closely with the CCPNR team, also joined the conversation. The key message was that better support at home is key to improving outcomes for patients – and saving money for the NHS.
The ethos of CCPNR, where physical and mental healthcare are treated together, alongside specialist work in the community, is core to the vision (opens in a new tab) of Cambridge Children’s Hospital.
Jo from Cambridgeshire told the MPs that her son Josh has been under the care of CCPNR since a car accident last November, when he was 17. After the accident, Josh wanted to get back to school and be with his friends.
When his physical injuries were gone, his injuries were forgotten.
Jo, Josh's mum
Educational psychologist Gemma Costello advocated for the family, working with the school to ensure Josh would have the right support, even after his physical injuries had healed. He is now doing A-levels.
CCPNR, run by Cambridgeshire and Peterborough NHS Foundation Trust (CPFT) but tightly linked to Addenbrooke’s Hospital (CUH), provides a pathway from acute care into the community. It was set up in 2009, because Child and Adolescent Mental Health Services (CAMHS) were being overwhelmed by young people who were struggling and dropping out of school, despite sustaining their injuries over a decade before.
The MPs were visiting as part of their work on an Acquired Brain Injury (ABI) strategy, something Chris Bryant had successfully campaigned for last year.
The presentation of Acquired Brain Injury changes over a child’s development because the brain is changing.
We might not see something in hospital, but it would come out five or six years later. That is the benefit of supporting the child in the community. You need a service that responds to the changing child.
Dr Ayla Humphrey, CCPNR co-founder and child and adolescent psychologist
Rehabilitation is most effective when delivered at home, according to Consultant Clinical Psychologist, Suzanna Watson. "The number one goal for the patients we see is to go back to school. Most kids want school, independence, friends and family, and for it all to be accessible."
Occupational therapist Gerald Maidens, from Cambridgeshire Community Services (opens in a new tab), explained that the support team goes into all aspects of the child’s life so they can understand what’s happening. They are the conduits between hospital and schools.
“People want to be at home,” he said. “Friends can also get skilled up to support the person who is unwell and help with rehab in different ways.”
Rehabilitation is goal centred around school and education, and independence at home. It’s about helping the child or young person to be as independent as possible.
Psychological support is also very important, according to Laura from Bedfordshire, whose daughter Charlotte sustained an ABI when she was six.
“Being in hospital had a huge psychological impact. Charlotte suffered from anxiety and panic attacks. What really helped was that everyone she met on her healthcare journey knew Charlotte’s story, so she didn’t have to keep repeating it.”
The kindness and flexibility of the professionals, working at Charlotte’s pace, gave her the courage to access other services, including CCPNR
Laura, Charlotte's mum
Laura believes that without this support Charlotte, now almost 13, would have dropped out of school.
However, the MPs heard that the level of support on offer is a postcode lottery and many children and young people stay in hospital for weeks because there is no other option. Out of 1000 children and young people each year who suffer a brain injury in the East of England, just 40 will go to CCPNR.
Spike, from Hertfordshire, spent 14 weeks in hospital, then spent seven weeks at home, with no support. His mum Carrie says Spike’s rehabilitation should have been done at home from the moment he left hospital. After leaving The Children’s Trust at Tadworth, it was another 11 weeks for him to be referred to CCPNR. “That was transformative,” said Carrie, “but the support should flow.”
Spike added: “Things should have been way more structured. The transition from hospital to home life was appalling. I had no idea what I was doing. My mum didn’t know what she was doing.”
At the end of the meeting, Helen Whately said, “The cost of having a specialist service like this pays for itself many times over. It saves a huge amount of money for the NHS but also education and the prison services. It’s better for families to be at home with the right support.”
Cambridge Children’s Hospital (opens in a new tab) will work hand in hand with community partners, local hospitals and regional NHS trusts, as well as schools and social care, to support families back at home. Digital and telehealth technology will allow us to support healthcare professionals from a distance and provide care where it’s needed most. Keeping our patients in the places they know, amongst the faces they trust, will lead to better outcomes.