Those of you who follow Adam on twitter or are regular visitors to this blog will know Adam spends a lot of time in hospital, about half his life.
Adam has had care in hospitals up and down the length of the UK, care that has ranged from the very best, to the very worst of what the NHS has to offer. Thankfully the hospital where he is currently falls into the first of these categories, staffed by caring, compassionate staff who treat Adam as a much loved, bright teenager and do all they can to help and support him and our family.
Adam is now 13 years old and one thing that has become very clear is how difficult the NHS finds it to cope with a child with the complexity of needs Adam has. Francis, Berwick and Keogh all call for patients to be at the centre of everything; for services to meet the individual needs of individual patients, but the more complex the patient's health, the harder this seems to be. There has been a lot of focus in response to Francis, Berwick and Keogh to meeting the needs of frail elderly patients with complex needs, just as there should be, but very little about children and paediatrics. About the need to meet not just the health needs of children and young people who have such difficult health problems that they spend large parts of their lives in hospital, but also their psychological, physical, social and educational needs.
Systems at present are set up to meet the needs of children with less complex needs, (and service provision for many of them is far from perfect), not those with the very most complex and demanding needs. For example, a child with cerebral palsy who can attend school each day receives regular physio, occupational therapy and speech and language therapy. The same child who is regularly in hospital does not, despite the therapists being based at the hospital. Since our move Adam's educational input has greatly improved and he now does get a daily teaching session while in hospital, but we know from bitter experience that there are parts of the UK, where irrespective of a child's educational potential this does not
happen. The local children's hospice where children with complex needs go for respite, can not provide one to one support overnight, so those who need one to one overnight care, i.e. the children where respite is most greatly needed, can not use it.
As a mum you hear a lot of talk about "joined up services", but the reality, even in parts of the country with "good" provision is often very different. The NHS still operates in its silos, managers still sit around tables debating as to which budget funds should come, all arguing that it should be any fund but their own.
Even the exciting "Make A Wish" type treats arranged for sick children tend not to be granted to children with very complex health problems. For children unlucky enough to have hospital acquired infections (thankfully the wonderful doctors now treating Adam have got rid of the HAI he previously had for a good (or perhaps that should be bad) 10 years elsewhere), even visitors are limited in some hospitals. This can mean the children most in need of a visit by Clown Doctors, local sports stars or entertainers are the very ones not to get one! Ironically, Adam was made a honorary Clown Doctor, Dr Saturn, when we lived up north, but he was not allowed a Clown Doctor visit, when he was in hospital! To illustrate how daft things are, he was allowed to see the Clown Doctors out of the hospital, despite still having the same infections. He was also not permitted to use the playroom when he was an in-patient, but was often asked to wait in the same playroom, with the same HAIs, if he attended as an out-patient.
Inevitably a child with very complex needs will require care from several specialties. However, ironically, because a child is in hospital he or she will miss out on this care. In our experience all hospitals seem to cancel out-patient appointments if a patient is in the hospital. Some, but not all consultants will come to see the child on the ward. When the consultants don't, the child misses out on input from that specialist, no matter how much it is needed. If a child, like Adam is frequently in and out of hospital, it can mean the child NEVER gets to see the specialists. Hospitals record the appointment as "MISSED" even if the department is told the child is an in-patient. The child then has to be re-referred and goes back to the bottom of the list. Inevitably, by the time the new appointment comes up the child is back in hospital, so the whole cycle starts again. Months, years pass and the child never gets to see the specialist. The same can happen with investigations and scans.
We are told our NHS is now a listening NHS, listening to patients and their families. This is exactly the type of problem it is easy to see can very obvious to patients and families, but has perhaps been by-passed NHS staff. Yes, Adam does have particularly complex needs, but he is not alone in this and I would not be the first person to say, "if the NHS can get things right for Adam, they will be getting things right for most children and young people". So lets see, can the NHS solve this problem for Adam and in doing so, hopefully for other children and young people likewise living with the most demanding of health?
NHS it is over to you!