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Patients need to take control-Cancer Survivorship

With waiting lists getting longer

What are we doing about it?

YOU can do your bit, help shorten waiting times, and even improve healthcare.

As a start, how many genuine patients sit on their local hospital Board?

Having sat on several, by-and-large the Patient Representative’s motto seems to be ‘don’t rock the boat’.  I call them the “professional patient”. They enjoy the status of being on the board, but think if they question anything they will lose their position.

Well, you won’t. I found that there were hospital Admin. staff who were really supportive if I raised a query, and Imperial College Trust even invited me onto their I.Q. committee, which consisted of  Heads of Dept. tasked with improving care.  Meetings took all day, and you knew that those sitting around the table all had the power to change and/or improve things.

Why not join your local Cancer Alliance

You could make a difference here. If your local Cancer Alliance is up and running, go to their next Conference – where eminent speakers come together.  Yes, they will stand up and say how wonderful everything is,  .  but here is your chance of asking about lengthening waiting lists, obsolete equipment, difficulty of getting appointmnts, etc.

However, beware the ‘professional patient’.  At our local Conference I met two other ‘Patient Reps’.  Hoping for a chat,  I went over to talk, and was frozen out!  “How did you manage to get an invitation?” They made it obvious they did not welcome anyone else into their cosy back-scratching sessions, and were not going to back me up if I questioned waiting times, or anything else.

So searching for better care, be prepared to go it alone.  What I have done might help: –

Waiting times

Did you know that as an NHS patient, you can ask to be treated anywhere?  After I moved to Oxford, I found waiting times stretched to infinity; I joked about getting an appointment back in London.  My GP sighed with relief.  “Who would you like to see?”  Arranged for me to return to King’s College Hospital, I found I was even entitled to hospital transport.  Since that talk I have returned to see three different consultants with shorter waits – when in Oxford I wouldn’t have reached anywhere near the top of the list.

Pillows

Yes.  Those things on which you rest your head.  With scoliosis from childhood polio, it’s vital my neck is supported.  When warned of a 4 hour wait on a trolley in A & E, I asked for pillows to support my head.  “We don’t have them any more”.  No pillows would have meant several weeks of pain for me as a consequence.  A medic was swiftly told that InjuryLawyers4U would have a field day if I didn’t get support.  Immediately someone was dispatched to a ward to borrow pillows, and I lay in comfort.

Pain

In A & E  a nurse came to wheel me off for an X-ray.  I knew that being lifted off the trolley onto a metal X-ray bed would be very painful, so asked to be given pain relief.  “You’ll get that after your X-ray”, she promised.  I refused to budge. A doctor had to be called to approve pain relief and she hadn’t wanted to do that.  But I had had enough of pain every time I was moved.   I won. And so I should!

Transport

I am an independent soul, but have to accept that I need hospital transport. It costs me £60 minimum for a taxi to the local hospital.  With sometimes as many as three hospital appointments a week, I just couldn’t afford to be independent, and asked to be assessed for transport.  But one week I missed two vital appointments when I found I had been ‘unbooked’ and transport didn’t turn up.  Complaining just got a reply promising I was entitled to a response within ‘X working days’, and when it came the result was no better.

So the last time I was ‘unbooked’, I sent the usual email to comment, but this time made it very obvious I had copied in my local MP.  Back came an immediate reply from hospital transport, and a phone call from some high-up giving me their personal mobile phone number.

Five days later it was obvious I had been ‘unbooked yet again’.  A phone call to her mobile sent me a taxi.  This arrived 25 minutes later and I made my important appointent.  Phew!  It worked.

What we all have to do

I have learnt to comment rather than complain.  That it’s no use jumping up and down demonstrating.  Instead one has to go the head honcho and ‘think laterally’ by copying in MPs etc.  Make sure you get your comments in before things get dire e.g. demand pillows, when lack of these would have had dire long-term consequences for me.

The NHS has no compassion for us if we end up in pain;  we have to prevent this if we can see it may happen.  Stand back from your problem and think about a possible solution.  Then contact the relevant senior Admin person in the department and suggest this.  Not the nursing staff – it’s not up to them.  But often Admin staff have the means to solve a problem, if only we contacted them.

It’s up to us

The NHS is our service, and the staff want to look after us.  It’s no use complaining, but a reasonable suggestion of “could you help by ….  ” usually gets a favourable response.   ‘Attacking’ an overworked nurse or doctor, won’t get far, so be brave and go to the ‘head honcho’.  They are the ones with the power to do something, but they need to know what is wrong.  

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