Don’tcha just LOVE NHS questionnaires? Who makes them up? 

Latest questionnaire is a Holistic Needs Assessment – being developed for cancer survivors

When side effects of drugs made me feel like this –

One of the cancer quangos sent me a Holistic Needs Assessment questionnaire which I was supposed to fill out, as a means of getting help for major medical problems. I had asked what I could do to get treatment for Neuropathy (side effect of one of the drugs I had been given);  I am trying not to panic, but my legs are getting weaker and a wheelchair is on the horizon.  I need help to stop this happening.  So I was sent an HNA (as a panacea ?). These quangos proliferate – in London alone I have come across::

  1. Cancer Pathways.
  2. London Integrated Care System
  3. London Cancer
  4. London Cancer Alliance.
  5. Transforming Cancer Services .
  6. Integrated Cancer Systems, etc.

Latest is National Transforming Cancer Services, tripping over each other to re-invent the wheel, cost NHS money, etc. and many with similar names – and aims I bet. One thing they have in common is hours of jaw, jaw and they all seem to have agreed to report in 2020! We need action NOW!

Since these started with the National Cancer Survivorship Initiative in 2007, our cancer survival rates have plummeted from 13th in Europe to 25th. Now I hear that the N.C.S.I.  website is being withdrawn – I don’t think the vast amount of time and money spent actually addressed the problems.

Filling out an HNA

I was told to fill this HNA form in, then “discuss this with your GP”.

Do these ‘quango-ites’  live in the real world????? GPs now allow us seven minutes of their valuable time.  It will take any GP more than this to glance over the HNA form.

For anyone who just feels abandoned when treatment comes to an end, with only minor side effects to report, an HNA is probably fine.  But for those of us left with major long term side effects, an HNA offers no guidance to a GP on where to send us to sort out the complex medical problems we end up with.

It seems the HNA  has been devised by a team who are keen to help the ‘ordinary’ post cancer patient – who just needs reassurance . But for those of us who need to know what we can do about major long term problems, it is Patronising.  Perhaps this attempt to stick a tiny plaster on a gaping wound goes some way to explain why we lag behind the rest of Europe when it comes to survivorship?

What is in the HNA?

  • Distress Thermometer !
  • Section on Psychological needs – this consists of buzz words covering Mood – Coping – Depression
  • It asks “how do I feel looking in the mirror” etc.
  • I felt those who drew up the HNAs had sort of missed the plot. When dealing with long-term side effects, these produce serious medical conditions and need a bit more than a ‘pat on the back’ and reassurance;.
  • And can I please have the name of whoever comes up with these tables like ‘Distress Thermometer.  All they do to me is send my Blood Pressure soaring,  Talking to other patients they say that these do NOT reflect accurately what a doctor needs to know.  In A & E last week I was asked “on a scale of 1 – 10, how is your pain?  When I replied TEN, Doctor didn’t even register.

Taking the HNA to my GP, she said she would read it later.  I can’t have ticked the right boxes, as she has sent me off to see an Opthalmologist:  I don’t think he can help me with degenerative muscles caused by Neuropathy., am still trying to work this out, but fear it means yet another time-wasting appointment to try and explain to a dis-interested doctor exactly what I need.  Are the quangos doing anything about producing a check-list that might point a GP towards the appropriate Consultant?

Polio Survivors Network could show the way

  • Just received a similar form from Hilary Boone of the Polio Survivors’ Network.  Their questionnaire is much more focussed on digging out what we can and can’t do, and pointing the way to how polio survivors can get help for dealing with day-to-day living;  showing how useful a practical questionnaire is when devised by patients.                                                                                                                                                                                                                                                                                                                                                                                                                                    This covers the section for those whose upper trunk was affected:
  • How difficult is it to:
  • .Open a tight or new jar
    Turn a key
    Prepare a light meal with some cutting
    Push open a heavy door (why are hospital doors so heavy)
    Place an object above shoulder height
    Load and unload dishwasher
    Wash walls or floors
    Make a bed including changing duvet
    Carry a heavy object weighing over 10lbs
    Change a lightbulb overhead
    Wash or blow dry your hair
    Wash your back
    Recreation in pool, swim lengths
    Drive a car for more than hour in moving traffic
    Use public transport walking, e.g. bus or train
    Arm shoulder or hand pain doing specific activity
    Tingling (pins and needles) arm shoulder or hand
    Weakness in arm shoulder or hand
    Stiffness in arm shoulder or hand

Why involve Patients?

Hilary makes a valid point, saying “I really do believe that multi-disciplinary assessments at the start would make our lives much easier”.   Yes – she is right, but instead Cancer patients are having to fight to get any assessment at all.

When I was in hospital with Polio, we had an ‘MDT’ assessment every week.  This meeant that each Friday, during the Consultants’ Ward Round, he was accompanied by the Physio, Sister, Registrar and assorted staff who were involved in our care.  Clustered round my bed, I could listen to what everyone said about my on-going treatment, and if anything was wrong, correct it immediately.  And suggestions that I made on new ideas to try out, were listened to – AND ACTED ON if feasible.  We worked as a genuine Team.

Today we hae ‘Team Players’ who keep their noses clean and couldn’t care less abut fighting FOR us.

If something is wrong, patients have no way of correcting what is discussed behind closed doors in the MDT meetings  – until suddenly you realise they have mixed you up with someone else.

NHS of old

Reflecting on these Ward Rounds, they were usually accompanied by several doctors from abroad who had come to UK to learn from the NHS’s expertise;  and presumably pay the NHS for the privilege.  You never see them today;  I can’t think where Oncologists might come to learn from us, except for one exception: The Royal Brompton Hospital often has a foreign doctor sitting in on my Consultations, as the Brompton’s team really do know their stuff.  When you think of Nightingale, Flemming, Hunter etc. etc. you wonder where have their descendants gone?  Abroad I presume.

If you hear loud screams coming from a ccrtain GP’s surgery behind Sloane Street – that’s me when I am faced with another HNA! 


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