Cancer Quangos are expanding – what do they offer survivors? 

After jaw-jaw that started in 2007, these are the NHS Quangos just in London that supposedly oversee cancer care. There may be some I have overlooked, and many others in different parts of UK:

  1. Transforming Cancer Services;
  2.  National Transforming Cancer Services
  3. Integrated Care System
  4. London Cancer
  5. London Cancer Alliance
  6. Open Access Follow Up
  7. Integrated Cancer Care Systems
  8. National Transforming Cancer Services
  9. Pan London cancer users group
  10. and the ‘Daddy’ of all money-wasters National Cancer Survivorship Initiative

All funded by the NHS;  all with large staff/offices/expenses, etc.  All supposedly working towards getting us better cancer care, and tripping over each other as they aim for the same thing.  Meanwhile it takes seven years to come up with an HNA which offers us help with assessing how we are feeling – when the 25% of cancer survivors who have long term conditions from side effects need practical help to deal with major medical conditions they have ended up with.

 What do we need all of these Quangos for?

No 10 – the NCSI – came up with this pretty design:

 

HNA wheel

After SEVEN years of talk, meetings, consultations etc, , as a Survivors does this ‘inspirational’ design mean anything to you?!

Asking Macmillan, NHS and everyone I could think of for help in navigating a complicated maze to find treatment for my side effects from drugs: Osteoporosis, Lymphoedema, Neuropathy etc. etc. I finally I get sent a Holistic Needs Assessment (HNA) containing the above – and EXPLODED!

It had ten pages of phsycho-babble to tick, and suggested I take this to my GP to discuss my needs !!!!! (Am sure the GP will be able to speed-read these pages, pick up what are my needs, and all in 10 minutes).

NHS wants to save money – cancer seems to be a soft option 

Officials dealing with cancer survivorship seem very coy.  e-mail after email asking with more and more desperation how I could get proper care for long term side effects from cancer drugs, only produced red herrings. Finally I got hold of a copy of the HNA, with its patronising assumption that I would waste my time describing what my mood was like, and other ‘babble’, when I needed professional, expert help; it’s patronising tone left me in despair.

The NHS is desperately looking for ways to cut back on spending –  but at least have the guts to list what we CAN be given, or where we should be referred to – my GP hasn’t a clue.

Currently, Cancer survivors can find services have been cut in subtle ways – e.g. follow-up appointments, or referrals to other professionals delayed. Delays aren’t good, and could be one reason why we don’t live as long as other countries’ cancer survivors.

BUT – there is money available when it involves NHS ‘initiatives’ i.e. putting in place ideas to ‘improve’ the NHS – such as Quangos to oversee cancer care.  Meanwhile it takes seven years to come up with an HNA which offers us help with assessing how we are feeling – when the 25% of cancer survivors who have long term conditions from side effects need practical help to deal with major medical conditions they have ended up with.

 What do we need all of these Quangos for?

To Improve cancer services?  DON’T be naive – the infamous National Cancer Survivorship Initiative (NCSI) started in 2007, and was closed in 2013 – because of its success !!!    When challenged to explain what exactly the NCSI had achieved, one so-called ‘Patient Rep’ got very defensive and told a meeting of cancer survivors “you wouldn’t understand”.

However, the current Quangos all seem to have agreed they will report their findings in 2020!  The fact that some of us have been waiting since before 2007 for the promised care doesn’t concern members.

So just hold on – forget about pain, problems and all those other boring things the NHS doesn’t want to know about – hang in there.  If you are a Survivor in FIVE YEARS you will have an answer for all you long term side effect problems – or not, as the case may be.

Why the HNA make me feel patronised

I suppose the HNA is useful – for some of us – but can anyone tell me what good it will be dealing with long term side effects?  Do we need to know about Safety and Security (isn’t that ‘their’ problem)

or a ‘Feeling of belonging’?  Yes, I would like to belong to a modern health service, not one still stuck in the 1950s.  It makes me weep when being treated in a French, Italian or German hospital, to find not only are they fully aware of nasty side effects, but have Specialists especially to deal with them.

Reading on with the psycho-babble, there was the usual Distress Thermometer asking how I felt ‘on a scale of 1 – 10’ , but as everyone feels differently, I couldn’t find anywhere to mark 100 for being patronised.

The HNA is listed as a ‘Practical Guide for health care professionals’, no wonder survivors aren’t getting the professional care they deserve. But I warn everyone the next time I am asked how ‘distressed’ I feel – take cover as there will be an explosion.

In the meantime, STOP duplicating efforts, and get some GENUINE patients in to advise on what we need NOW.  Or does the NHS hope we will have all died off and gone away by 2020?

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