Often it isn’t cancer survivors have to fight, it’s NHS waiting lists

 

survivorship

The Chancellor says the NHS will receive £20bn extra over 5 years.  Before we celebrate, let’s see if waiting lists, one of our biggest problems, are going to get any shorter.  Survivors often get landed with numerous long-term side effects. By the time we finish treatment we have learnt a thing or two, particularly about what we need to handle these side effects.   NHS advice to “ask your GP” can mean talking to an over-worked GP who has minimal knowledge about cancer, such as mine asking me “what is a DEXA Scan?”

Once we finish hospital treatment, we can wait months for important follow-up appointments for the long-term side effects from conditions that came about from treatment;  osteoporosis, fatigue, painful joints, heart problems, neuropathy etc.  No-one warned us these might occur, and treating these are not seen as urgent.  So waiting lists for treatment – or even a diagnosis – get longer and longer.

You would think the cancer charities Helplines would help – recently I wanted help in my area to get rid of the post-code lottery here.   No,no – they can’t do this, but they can keep on sending me emails asking if I would join in fund-raising.  Yes, as soon as some of these funds go to help survivors.

So, before getting excited that things might improve with the extra funding, hold on! According to industry gurus, the extra allocation still means funding is below the 1948 -2010 average, and just over 1% more than the 2010-19 all time low.  So fat chance of reducing waiting lists.

Only cerainty is you can bet your bottom dollar this extra  is NOT going on survivorship. Survivorship comes low down in priorities.  We survived, so the NHS knows we are  resilient.  The fact that life is tough because of all the extra time we now have to wait for much-needed care, plays no part in NHS thinking

Where does the money go?

Having sat on NHS management committees, run by mega-expensive Management Consults such as McKinsey, KPMG, etc.  at the Dept. Health (can’t they think for themselves?), I watched open-mouthed as savvy fellow-members such as GPs, Civil Servants and NHS Administrators, carved up NHS funding for whatever new initiative will benefit their career;  blow what patients needed.

The wishy-washy way Hammond announced this ‘extra’ funding makes me fearful this will be allocated where it’s going to do someone’s political career the most good.  Call me cynical, but sitting in a lowly position as a ‘token patient’ on NHS committees made me see how Whitehall works for vested interests.

What can survivors do now?

One of the numerous Quangos set up by the NHS is the Cancer Alliance.  Take a look at the following, and see how it’s spread its tentacles across the UK : –

https://www.england.nhs.uk/cancer/improve/cancer-alliances-improving-care-locally/

It shows what is happening in your area.  So it might be an idea to contact your local Cancer Alliance and tell them YOU would like to have your say.  Sooner or later their cosy little cartels will have to admit more patients, who are best placed to say where money should be allocated.  At the moment, the only patient reps. I have met for ‘my’ Alliance are ‘yes-men’ who are to tick a box, have a free lunch and a day out – I’m sure you have come across these ‘nodding heads’.

Every area of the UK has a Cancer Alliance; all have an annual conference.  I have just been to ours, where two patient reps., were most indignant that I had managed to get an invite.  They were basking in reflected glory of being ‘consulted’ knowing they wouldn’t rock the boat, and didn’t want anyone else muscling in.  Well the NHS boat sorely needs rocking off its complacent pinnacle.

How the NHS impacts on life

My daily routine seems to include chasing up ‘delayed’ appointments, reminding authorities about non-existent promised care and negotiating the murky world of double-bookings – why on earth can’t the computer flag up I already have an appointment on that day at the same time?

Today there was a variation (to keep me on my toes?)  A letter arrived from The NHS e-Referral Service Team; unsigned, with no address, telephone number, email or any other way to contact them.  It informed that my appointment Ref Booking Number …..  had been cancelled. I have fourteen different conditions, and at least two medical appointments a week, so I hadn’t a clue what was cancelled.

E-Referrals will be delighted to hear they kept me busy for three hours, phoning NHS England (who sounded cheesed off with e-Referrals), my GP (definitely not a fan, and we had a chat about how fed up he is), and various other bods, none of whom could help.  Until I finally came lucky with someone after umpteenth phone call to NHS England.  My tones of desperation must have struck a chord and she tracked down the right department.

Turns out this was for an appointment back in August that was cancelled as I was ill.  It had taken e-Referrals two months to send out a useless letter to inform me this was cancelled.  But boy, had it given me mental exercise.

NHS are obviously taking to heart the advice that keeping our minds active is good for mental health.

Living with and Beyond Cancer

So we come to survivorship – officially the NHS says it aims

  1. To provide emotional support once active treatment is complete
  2. To sign post to services that can provide practical help once active treatment is complete e.g. Citizens Advice Bureau, Sexual health counselling, complementary therapies
  3. To come together as a group to normalise the feelings of loneliness and recognise that most cancer survivors struggle.

Hmmm.  No mention of physical problems such as fatigue, lymphoedemia, neuropathy, osteoporosis, joint pain, hot flushes, nausea, fertility problems, etc. 

The NHS is now focussing on mental health, but it must remember that many survivors have physical problems – and these can impact massively on our lives.  So we need help – not to be asked “what did you feel like last week?”

Frankly, I felt bxxxxxy-minded; yet again I had been told that I couldn’t be given an appointment with a specialist, but I was “on the waiting list for an appointment”. These pathetic Holistic Needs Assessment forms have no tick box for how I felt – and anyway ticking a box wasn’t getting me the care I needed.

So anyone who wants to contact their local Cancer Alliance, to ask why haven’t they addressed our needs as survivors, I say Go For It!

P.S.  What are others doing?

Have a look at Dr. Ann Partridge of Dana-Farber, one of best cancer hospitals in the world, explains

 

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