Ashya – NHS too arrogant to help?

Will the NHS learn from this case – or will more patients be at risk?

Amongst all themedia hype, two aticles stand out.

The Daily Telegraph devotes its main page to Dr. Max Pemberton.  Pemberton is respected amongst medical journalists, and his weekly Health Feature is usually widely quoted.  He always speaks sense, and he has made me think with his article “Ashya Belongs in Britain”.  I don’t  in gree with what he says, but his is the first British medical voice that has come up with sensible, non-self justifiying comment on this sad case.

I realise there must be another side to the story, so if you feel as I do, but want a balanced view of this sorry case, have a look.

Roy Lilley’s usual sense

As usual Roy has an excellent article, The Same Situation, on nhsmanagers.net about this case.  He has been in the medical field for years, and has produced a sensible argument, saying

As far as I can tell; two perfectly sane, loving parents lawfully took their child from a hospital in Europe, that cannot offer a sophisticated therapy, to one in Europe that can. The treatment is proton beam therapy. There is a PBT centre in Madrid near the prison where Mr and Mrs King are presently banged-up.

Pemberton is trying to defend the indifensible, that the NHS knows best.  I know it does not, from bitter personal experience.  But applaud Pemberton trying to defend what he works for in a sane, balanced manner.

But the Southampton Hospital needs to learn that PATIENTS COME FIRST, whatever their idealogy.

What happens now

 As the horrifying “circus” unfolds around the little 5-year-old cancer patient, I remember the arrogance that I suffered being treated for cancer. I wasn’t hand-cuffed for daring to question British Oncologists’ statements – but felt sandbagged just the same when they tried to destroy all hope, and refused to listen to evidence that I had obtained from US cancer centres such as MD Anderson, Dana-Farber, Johns Hopkins, etc.  In fact I got the impression many hadn’t even heard of the world’s top cancer treatment centres, when they arrogantly dismissed Internet information.

So, wanting to help fellow patients, and improve the way we were treated, I volunteered to sit on the hospital’s PCAG (Patient and Carer Action Group) Committee.  There was little effort to improve things – instead when I suggested there should be a Cancer Support Centre, the Chairman said “we didn’t have this, so why should anyone else expect it”.

A Professor asked for supporting letters from each committee member;  the NHS wanted to take away funding for a certain cancer treatment at this hospital.  I asked him several times what he had done to find out what was being offered in Europe (where apparently survival rates of this type of cancer are better), and he refused to answer.

Then we had a massive meeting to discuss huge media interest stirred up by a patients’ relative:  she had expressed concerns, but apparently the patient had told nurses she wanted different treatment.  So when her wishes weren’t taken up, this relative had gone to the press.  Instead of talking through what could have been done to improve communication in an obviously difficult situation, the hospital  spent a long time discussing how distressed the nurses were.  Sorry, but being a nurse is about handling distress: get over it.  It’s worse for the patient and their relatives.

Then I wrote on this post about the inept treatment I had had, and how I had gone to France to get proper – and effective – care.  Instead of trying to improve matters, I was waylaid by 30 of this committee, and told I hadn’t been supportive of the hospital.  No attempt to see if it could adopt the excellent way my case was handled in France, or learn from their more modern methods (well documented in over 80 successful clinical trials).

So I resigned.

What happens next

It seems that the Police are being made scaoe-goats;  but what on earth were they to do, when a supposedly-reputable hospital tells them they are concerned for the child.  It was claimed Ashya’s feeding pump battery was due to run out (FALSE);  they were concerned for the child (more likely it would come out, as it is doing, that there was appalling communication between the family and hospital);  the hospital were concerned for the child’s welfare (so they set in motion his parent’s  arrest) etc.

So concerned in fact, that the end result is a little boy alone in a foreign hospital, with no friends or family near, his parents locked up in cells, no support from anyone in Social Services or the hospital, for doing what?

 

 

 

The sooner some over-paid CEO from the hospital gets off their xxxside, flies out and sorts out this dreadful tangle, the better.  Before the public starts asking questions about the arrogance so many patients face when being treated for cancer in UK.  Doctors are supposed to help us, not fight us for the sake of their crumbling reputations and egos..

 

 

 

 

 

 

 

 

 

 

 

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