having a bad hair day

Survivors stress out, as treatment gets worse

If this picture looks like you feel – you are not alone the way today’s NHS is operating 

Sitting in yet another Conference, I looked around at all the professionals involved (those that get paid vast salaries) and realised there were hardly any patients in the audience – they weren’t invited.  Was it because their expertise was practical, not theoretical?  They could challenge the cosy way the overpaid gurus were allocating funding.

Having just moved to Oxfordshire, it is obvious that recent cuts have left even less in the funding pot. GPs have been warned that there is no money available for check-ups and on-going care, and as a ‘new girl’ on the block, I was going to have to fight hard to get care . Fall out of one’s carefully co-ordinated care plan, and it’s the devil of a business to get back in. Post Code Lotteries are alive and thriving.

There IS funding available

Surprise. Surprise. There always seems to be money for professional conferences that cost NHS money to attend. In the audience there will be few patients, it’s just the big boys gathering to see what they can grab out of the pot. Some guru will stand up, produce Power Point presentations with unreadable figures and tell everyone what a wonderful job they are doing. No-one listens to us sitting there with mouths open, wishing our care could get some of this dosh.  Mention that the World Health Organisation (WHO) part of the United Nations, says we have almost worst cancer survival rates in Europe, and these overpaid gurus ask “what’s WHO?

Speaker will promise things will be better – in the future. This was 2020, but now that’s getting closer the goal posts have moved to 2025.  The vested interests involved in cancer care all subscribe to this revolving doors in politics and the charity sector, and nothing gets done.   Chris Lewis, noted blogger, says as the staff continue moving around. “I have seen recently that my friends at Macmillan Cancer have had a shakedown and several of their ex employees are now in senior roles in the N.H.S. Thus ensuring that the tight relationship with the large charities are strengthened, leaving no room for different organisations and fresh ideas.

Latest wheeze – I can’t dignify this with a more business-like description – is to inform those of us who volunteered to help promote better cancer care that we are expected to go on a training course on the new Data Protection Act.  The fact that we are there to volunteer to HELP others, but won’t hold lists of contacts therefore don’t need to know how to store data safely, has been overlooked in the rush to get an expensive training organisation involved. But query why training is needed – no answer.

As Chris says, this is total madness in a world of sparse resources. The whole sector needs a complete shake up, root and branch!

What do Reports Achieve?

No wonder so many of us are stressed out;  Macmillan has published yet another report on what’s in store for us and it’s 61 pages of gloom.  But, after reading this, I  phone to ask how I can help campaign for the better care mentioned, and am told it’s not something Macmillan are doing.

Instead there is talk about ‘fighting’ cancer, but nothing to say what we can do to improve matters.  We face having our treatment glorified by being described as a ‘journey’, yet when we go for check-ups no-one tells us where we can protest when we are informed that the unit is closing down.  This is where we have to take on the ‘fight’ ourselves as we struggle to get treatment we should receive automatically.

I am still shell-shocked, after a recent confrontational half-hour on the phone with my GP. He wanted me to justify why I need a DEXA scan.  Frankly, if he bothered to read my notes, this should be obvious  – but he has been told he has to save money, and I am today’s target.

Now I have my fighting boots on in spades.  Phoning Macmillan to ask what campaign I can join to try and improve our cancer care, I am told they aren’t doing anything.  Why? Because of “the new data protection act” etc. Its seems it’s going to be a cop-out for just about everything.  The will to get on with it and improve our lot seems sadly lacking.  So, stuck in the horrors of the post-code lottery, I have to continue on my own to combat this modern disease. We all suffer Stress, it comes with having to try and get correct treatment out of the NHS.

We are on our own

Image result for Midsomer MurdersMoving to Midsomer Murders country, it becomes obvious that I can’t rely on the NHS.  All the care I received in London to keep me on my feet will have to be fought for now I have moved to a Range-Rover society.  Those who should be fighting for equality of care extol the virtues of the two local private hospitals, and the CCG can’t help.  One begins to wonder who decides how NHS funding is spent when there is so much inequality between areas/

The Vicar comes to tea and tells me how she organises prescription runs, because if you are disabled and don’t have a car. no-one delivers your pills.  There is a once-weekly bus run into the local town for an hour, but that’s that.  It’s unbelievable that there can be so much disparity 50 miles down the road from London, but that is today’s reality in the NHS,

So it I want to continue on my feet, and hopefully leading a nearly-full life, I have to fight on my own.  It’s difficult to come in as a stranger and ask ‘Why?’ as you feel you are butting in,so it’s a question of puffy-footing around and hope I don’t upset too many people.  C(r)apita is in charge of many services, so that says it all.  So I assemble my fighting kit, and make lists using the Macmillan Report as a template.  Might as well make themselves useful.

What can we take out of the Report?

It’s states the obvious, but here are points :    

  1. Earlier Diagnosis

Andrew Lansley, our last Minister of Health, used to look down his nose whenever I bought up this question;  “it’s not the NHS way” he would say.  Bet he’s feeling different now it’s realised his cancer would have been caught earlier if UK had same diagnostic programme as other countries.

2.  Access to best available treatment regardless of age or where you live in UK

As soon as I found out we had the right to be referred to any hospital for treatment, I started building up a ‘team’ of excellent consultants to look after me.  I ended up being treated at eight different hospitals, but then you can’t expect one general hospital to cover conditions from osteoporosis to lymphoedema.  I had very good treatment in London, and when they heard I was moving to Oxfordshire, Consultants would say “I’ll refer you to XXX”,  Probably warning watch out for her!

Five months after registering with a local GP, have I seen them?   Silly question.  My new GP is questioning why I need to see experts – he says they can cover all my care in-house – but he doesn’t even know what a DEXA scan is for!

3. A ‘Recovery Package’ of care and support for everyone diagnosed with cancer

Haven’t we been asking for this for yonks?  Just get on with it. But phone the Helplines and you find they can tell you all about diagnosis and treatment, but for information about what you need to do to stay healthy and help with handling long term side effects from drugs – we are told “ask your GP.”

4.  Increased physical activity

If Guys Hospital can provide superb Hydrotherapy exercise with three patients in Image result for nhs humourtheir pool with a physio, and charge £20 a session, why can’t we have this in other hospitals?  These pools are expensive to run, but often only in use for 1/4 of a day.  What an under-utilised resource.  And having been told we need to exercise, if we have picked up neuropathy we are told only to do this under supervision in case legs give way – BUT the NHS then turns round and says after 6 sessions that’s it!  It beggars belief.

I go on struggling;  people say “you do look well” so stress must do something for my complexion, but Oh!  how I would like to have the TLC given survivors in Europe.  There health national health services believe Prevention is king, and as much exercise as your consultant thinks you need is provided.  The number of sessions doesn’t depend on a meagre budget with constant cut-backs.

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