Before children I had never paid a visit to the local accident and emergency department as an adult. When my first three came along I had a few visits there, mainly for high temperatures which were not responding to the usual treatments at home, two of those visits resulted in Xanthe being hospitalised for care so clearly my instinct that this was a genuine medical emergency was right.
Daisy's discharge from the neonatal unit also came with a gold plated, annual pass to the local A&E department however.
For the first few years after premature birth children are much more susceptible to infections which are far more serious than the usual childhood bugs, we were in and out constantly.
It was when things became more complicated that I began to question the appropriateness of A&E for every one of Daisy's ailments. When your child has a central line they are at a significant risk of developing sepsis, a life threatening infection into the blood stream. Daisy has had many of these infections, she has needed resuscitation, blue lights, specialist ambulance transfers to intensive care.
Seizures that cannot be controlled at home have often needed an ambulance trip to A&E and time spent stabilising her.
Recent visits have also included anaphylaxis as a result of an allergic reaction to one of her drugs and problems with her central line breaking or being pulled out.
And for all these episodes we are so grateful A&E is there for us, it is the safest and best place for Daisy.
But the problem comes when you have a child who is too complicated for a GP. Our GP practice is fantastic, they do everything they possibly can for Daisy, but the one thing they can't do is prescribe her antibiotics when she needs them, this is because when Daisy needs antibiotics they have to be given intravenously.
So often we find ourselves being told to go to A&E for things that are not acute, often when Daisy has a chest infection or urine infection and needs IV antibiotics. I know what she needs but we have to go through a whole series of hoops, often taking a few hours to leave with the medication she needs. Daisy in the meantime is stressed and overloaded. She hates A&E, particularly when she is not acutely unwell. Going to A&E reminds her of the scary times where she has been very poorly, she knows it can sometimes mean a stay on the ward, she knows she will have to wait around a long time. As a result she will normally have a meltdown when I mention that we have to go there (during those times where clearly with any other child a GP visit would suffice).
The problem is, as with many other elements of Daisy's life, the infrastructure and support is just not in place to care for the complex child in the community, so A&E has become the dumping ground for them when things go wrong. What Daisy really needs is specialist, community based care or at least a named complex child team so that she, and the many other complex children on ventilators and TPN and other complex care regimens can avoid the stress and anxiety of the Emergency Department and receive the care they need in a setting appropriate to them.
We hear the words "Care in the Community" bandied around or the local initiative "Better Healthcare closer to Home" but the reality is that for children like Daisy and the others like her discharged back into the community on complex care regimens these are hollow words. It is all very well for bureaucrats and pen pushers to come up with these, very admirable, strategies to reduce pressure on hospital beds and ensure that patients receive care and treatment closer to home and in the community but without the infrastructure and investment in place these strategies fall down and serve instead to create even more pressure on stretched services. You can't cut beds and A&E departments without making sure there is somewhere for those patients to receive care and this is clearly the case with the care of chronically sick, complex children, once again our children have fallen through the planning and investment cracks.
There really is no care in the community, already stretched and underfunded community nursing teams are having to juggle the needs of short term patients leaving hospital with those of chronically sick, patients. In our area our community nursing team is only staffed to cover Monday to Friday, 8am until 6pm. They are completely stretched and as well as visiting children to take bloods, administer IVs and give injections (all things I do every day for Daisy), they are also dealing with the paperwork and bureaucracy that comes with managing the transition of complex children from hospital to home. And when the office is closed, guess which department the answerphone message directs you to?
So when a child is ill and it's not a life threatening situation it is often easier to send them into the Emergency Department. Which would be fine if A&E wasn't already bursting at the seams with other people who are using it in lieu of simple first aid and common sense (believe me, the things I have seen over the years!), and if A&E was set up to deal with a complex child like Daisy with a learning disability.
The Accident and Emergency Department is becoming the dumping ground, not just for the complex children who don't have community based support but for the families who can't get a GP appointment or who are not consulting their health visitors.
And ask any A&E nurse about what they think about the 111 service, the replacement for NHS direct? It seems that they also are responsible for directing children to A&E when they should be going to GPs or Pharmacists.
And then there are the children with mental health issues who can't access their regular services out of hours, again where are they directed to go when Child and Mental Health Services (CAMHS) are closed and they are in crisis? . Over the years we have seen it all from the baby with milk spots whose parents called 999 thinking he had meningitis, to the teenager overdosing and then Daisy, with her acute problems and the ones which are not so acute. Yes, dumping ground really is the right description.
There is something fundamentally wrong when A&E becomes this collective dumping ground. Where is the community based support for children's services which would mean that the emergency department could be used as just that, for emergencies only?
Care in the community, Better Healthcare closer to home - these are just soundbites, they are not rooted in reality when it comes to Paediatric care. It seems that Children's Community Services have become the Cinderella of the NHS Care in the Community strategy, flawed as it is anyway. There does not seem to be the joined up thinking that if children are surviving thanks to advances in medical science and able to leave hospital then there is a need for investment in the services to support them at home. And even more importantly, to provide respite care to allow their poor, overworked parents and carers to get a break.
And it gets worse. We are fortunate that our A&E has a 24 hour separate Paediatric unit, I know that day or night Daisy will be seen by a Paediatric doctor. This is now under threat. Despite being crammed at the seams, regularly breaching it's waiting times because of the sheer volume of patients visiting the department, the government, in it's wisdom is seeking to close our local A&E and merge it with another hospital. If Daisy finds visiting A&E stressful now, what hope does she have if she is forced to go to another one, further away, without 24 hour dedicated paediatric cover.
We know the NHS is at breaking point, we know that it needs huge investment to cope with the pressures it is under, but simply cutting beds and directing patients to A&E because they don't have the healthcare support in the community is not a solution.
I'm only a lay person but it's hardly rocket science is it? Just moving people around the system to paper over the cracks is going to cause pressure points that will burst.
This is my plea to the managers and bureaucrats - would you drag your anxious, stressed, immunsuppressed child to spent four hours waiting in a busy Emergency Department just to get them the medication they need to keep them out of hospital? This is the reality we face, and many other families caring with complex children face, it simply is not good enough.
Surely given the investment the NHS has made in keeping our children alive and out of hospital they warrant more than this once they are at home?
Websites close to my heart
- Shooting Star Chase (Daisy's Hospice)
- Great Ormond Street Hospital Children's Charity
- Torbay Holiday Helper's Network
- Sick Children's Trust
- Daisy's Angels - Facebook Page
- About Costello Syndrome
- Asperger Syndrome
- Caudwell Children
- Together for Short Lives (Children's Hospices in the UK)
- Costello Syndrome Support Group
- Give Kids The World
- PostPals - Putting Smiles on Sick Children's Faces
- Singing Hands (Daisy is their No1 Fan!)
special needs (86) costello syndrome (46) disability (34) Great Ormond Street (21) aspergers (19) TPN (18) cancer (18) carers (16) parenting (14) autism (10) shooting star chase (9) children's hospice (8) Blogging (6) family (6) SEN (5) hospice (5) Mitrofanoff (4) diagnosis (4) BIBs (3) Britmums (3) Neuropathic Bladder (3) communication (3) holiday (3) benefit cuts (2) david cameron (2) gastroenterology (2) singing hands (2) travel insurance (2) BSL (1) Child Hospice (1) Colectomy (1) antibiotics (1) benefit scrounger (1) bladder (1) france (1) health (1) line infection (1) makaton (1) portage (1) siblings (1) sign language (1) sign supported english (1) ultrasound (1)