Tag Archives: Patients’ Association

What IS happening to taxes – are they going to NHS?

Major Cancer Helpline

exercise cartoon

Advises “Go private”

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Complaining about NHS – a.k.a. Beating your head against a brick wall


NHS are past masters at “dealing” with Complaints

They’ve got biggest carpet in the World nhs

to sweep them under

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Granny needs her fighting boots – Cancer survival rates worse for elderly

OAPs still being neglected


They need someone to fight for them in hospital

As Gran was lying in the hospital ward, I asked the Doctor  “when will you operate?” Continue reading

NHS thinks we are stupid

Fuss about patients going to A & E –

NHS says we should be seeing GP

BUT Patients Association says most patients are ‘right to go to A&E’

The Fraser Centre, Milngavie (Glasgow) where t...

Ninian Reid

saying “New research published by the College of Emergency Medicine (CEM) has revealed that just 15% of attendees at Emergency Departments could have been seen by a GP in the community without the need for Emergency Department assessment”.

In other words, they know better than the Dept. Health, NHS Continue reading

Look your doctor in the eye!





I had an appointment with someone who treats the Royal family;  it was a delightful experience.

Treated with the utmost courtesy;   the Consultant got up when I came into the room, and during the whole consultation I was looking at them full-face – not a computer screen in the way.

What a difference from the computer whizz kids constantly tapping their keyboards.   A recent survey in Pulse (the doctors’ magazine) complained that consultations had become more complicated and intense over the last five years.

  • only 55 per cent of any consultation was spent “speaking to patients” and “addressing their concerns”
  • one third was spent on paperwork and data input.
  • 38 per cent felt they could not give patients enough eye-contact because they had to spend so much time entering information on to computers to meet Government targets. Much of the information that doctors must input relates to bonus payments for the performance-based aspect of their contract i.e. the dreaded QOFs.

So instead of making life easier for doctors and giving us more ‘quality time’ during appointments, the NHS wastes time by changing the rules.

GPs are now compensated for the different conditions they treat, rather than giving every practice an overall payment according to how many patients are on the books.  Hence the amount of time GPs  spend in-putting data onto screens, so they can claim the maximum fees from the PCT, rather than observing us and answering our needs.

Vanessa Bourne, Head of Special Projects at the Patients Association says,  “GPs are the gatekeepers to all other healthcare. Patients must be able to trust that an accurate diagnosis is being made. At the very least that means having a proper look at the patient”.

So what actually happens?


  •  half of GPs said that their Primary Care Trust (who pay for GP care) did not support them in “offering high-quality patient care”
  • 27 per cent said PCTs were “actively obstructive”.

One wonders if they worry more that forms are filled in, rather than patients are getting proper care.

Average consultation lasts 11 minutes – although GPs say they need around 14 minutes to give us adequate time.  However, under a new payment contract introduced in 2003 (when QOFs reared their ugly head), doctors are working seven hours less per week. The harshest critics have said that if doctors worked longer, they could spend more time giving personal care.

“If PCTs are to blame for the wrong priorities in a consultation, then patients risk being shortchanged twice over – once by their GP and again by the PCT. For over a quarter of GPs to feel that their PCT is being “actively obstructive” tells patients that urgent action is needed,” according to the Patients’ Association.

Demand to see a Consultant

The Clinic system as offered by the NHS would only be tolerated by us.  I can’t see other nationalities meekly waiting to see a Consultant, then allowing the staff to shuffle them off to see another doctor

  • whom they have never met
  • who only has ten minutes in which to get a grip on their case
  • who in that ten minutes won’t have time to read their notes and familiarise themselves with your case
  • is expected to give a balanced judgement about your treatment for the next few months, when they may never have seen you before

What can you do?

Needless to say I don’t get marks for popularity;  when called through during a Clinic to see an unknown doctor, I politely tell the Receptionist “I am here to see Mr. XXX” .  She usually tries to push me through anyway, but I say sweetly that I will wait.  And sit back.  They will try and pay me out by making me wait at least an hour, but I reckon if I am going to see a Consultant and have the appointment paid for by my NHS contribution, I have to put myself out to a reasonable amount.  But to see a stranger, who has no idea of my medical history, is not fair on me as a patient.

Best of luck.  Doctors are supposed to be asking for more time with patients – so supposedly they will support your action.  And even if they don’t, you are seeing someone who knows some of your medical history – is not coming to it cold.

To see the original Pulse Magazine article and download the full survey results, please visit:

To see more about the Patients’ Association, or to sign up for their excellent newsletter, http://www.patients-association.org.uk/Join-Us.



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Stating the obvious re hospital food

We all hate it!


Sunkist oranges, bananas, pears, apples, and a...

Give us more of this

My local hospital is so fed up with complaints over food, it has raised a massive stories-high banner in its Atrium, which proudly says its food received an EXCELLENT in the PEAT Awards.  All costing £600.

Doesn’t mention that PEAT awards are researched by hospital staff – who sometimes forget to take negative comments into account.

What Hospitals should be doing is making sure stuff it feeds us is fit for purpose.


Good things are happening

University Hospital of Wales, in Cardiff, is about to surprise us.

NHS patients in Wales will receive meals based on mandatory nutritional standards, with limits on the amount of saturated fat and salt but plenty of protein, fruit and vegetables.

The guidelines say patients must also receive seven to eight drinks per day; water jugs must be changed three times a day and snacks must be available 24 hours a day.

All hospitals in Wales must have fully implemented the standards by April 2013.  (Why not now?)

Campaigners are calling on the UK Government to follow Wales’ lead and introduce nutrition standards for all hospital meals.


If you visit hospital frequently, and can’t stand the food, what have you done about this?

The Good Food for Our Money campaign is now calling on Health Secretary Andrew Lansley to follow Wales’ lead and implement a system in England.  The campaign is a coalition of groups including the National Heart Forum, Patient Concern and the Royal College of Paediatrics and Child Health.

Alex Jackson, co-ordinator of the Good Food for Our Money campaign, said: “Introducing legally binding standards for hospital food in England is the simplest and most effective way to improve patients’ meals.

So what can you do?

  • Don’t moan to the nurses.  They have no say in the matter.
  • Neither is it any good complaining to the hospital.  Most get their food from outside caterers, sometimes over a hundred miles away.

What you can do is

  1.  Ask your MP to look in to this.
  2. Contact charities mentioned and ask if they can help you/give you advice
  3. Organise friends on a rota to supply your food.
  4. Complain to the Catering Facilitator (or whatever Jobsworth title the hospital uses) and ask them why they aren’t providing you with nutritious meals.  It will probably be the first time they have ever made contact with a patient, and sparks might fly!

“It’s unacceptable that hospital patients in Wales will be guaranteed healthy meals but patients in England will not.

Patients’ Association

Or you could phone the Patients’ Association and ask them what can you do?  Katherine Murphy, chief executive of the Patients Association, said: “Patients in hospital need every support to get better and back to their families as soon as possible. A healthy and nutritional meal is one of the key steps on the road to recovery. Patients must be given nutritionally balanced and healthy meals as standard when in hospital.

“Wales is leading the way when it comes to free prescription charges and it is excellent they are guaranteeing healthy meals in their hospitals.

“Andrew Lansley needs to sit up and take notice and make these initiatives apply in England.”

What Wales is doing

The all-Wales catering and nutrition standards for hospitals outline exactly what patients should be offered daily, including the calorie content of each main meal and snack.

They require that patients are given a choice from a “varied menu”, a missed meal services is available and that main meals should be available every four to six hours throughout the day.

And the standards include the minimum provisions – such as tea, coffee, biscuits, jam and milk – that should be available on every ward.

In their introduction to the guidelines, chief medical officer for Wales Dr Tony Jewell and Professor Jean White, chief nursing officer, said: “Hospital food is an essential part of inpatient care. Good food can encourage patients to eat well, giving them the nutrients they need to recover from surgery or illness.

“The aim is to elevate the provision of food to the same importance as medication; raise awareness of nutrition in relation to patient safety; and to enable catering to be recognised as a clinical support service.”

A Welsh Government spokesman said: “Significant work has been done in Wales to improve hospital food and support for patients to eat their food.

“On admission to hospital, the nutritional needs of all patients are assessed and standards are in place to ensure that they receive high quality food consistently in hospitals across Wales.

“This is backed by a nutrition awareness campaign for staff aimed at raising the importance of food and hydration to the same level as that given to medication.

“These are simple things that make a big difference to patients and we hope others will follow the example of the NHS in Wales on this work.”

Good luck – and Bon Appetit!




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What happened to the old doctor – patient relationship?

LONDON - MAY 01:  Workers take calls at a Nati...

Call centres replace GPs. daylife

One doctor’s view of what is happening to his job


There is an NHS doctor blogging anonymously on abetternhs – and this week he comes up with very, very sensible comments on today’s patients and their relationship with their GP:

‘The myth of the ‘trivial consultation

“Despite the best efforts of a modern, scientific medical education, most GPs realise that when a patient presents, the pathological process is only one of several processes, (social, psychological, economic, environmental, spiritual, etc.) that contribute to the patient’s sense of illness or well-being.

The nature of general practice, by which a doctor gains, over time, a knowledge of their patients lives enables them, through the development of a therapeutic relationship, to act as a holistic practitioner, understanding their presenting symptoms in the context of a broad range of contributing factors.

Increasingly we complain about ‘trivial consultations’, and eager to support us, politicians, policy makers and managers help us think up creative ways to ease the burden of the General Practitioner so that someone (or something) else; a nurse or pharmacist, or their assistant or deputy, or perhaps a receptionist or NHS Direct, an Internet site, in fact, anyone – or anything- paid less, can deal with them so that the overworked, over qualified and over-paid GP can concentrate on the type of complicated, high risk consultation that their expensive years of education and indemnity premiums justify.

There can be little doubt that education can inform and empower patients to manage many health matters without the interference of their GP, or for that matter anyone else, just as there is no doubt that the other sources of advice and treatment listed above can offer an excellent service -many as good, and some -for some patients with some conditions in certain circumstances, better than a GP. Patients have always made use of a wide range of advice and treatment options and the majority of ailments have always been managed without the ministrations of the GP. This will always be the case. What is changing is the range and number of options that come with our approval and encouragement, increasingly also assessed as being ‘quality’, ‘sensible’, ‘official’ or best of all, ‘evidence based’.

Under pressure, either implicit or more direct, patients are encouraged not necessarily to deal with problems themselves, but by exploring a plethora of other alternatives, to avoid bothering their GP unless absolutely necessary. The GP is increasingly being marketed as a last resort, rather than a first line. Once the patient has tried the advice of friends and family, taken some over the counter medicines, searched for advice on the Internet, seen the herbalist, read the practice leaflets and made a case for their need to see a doctor to the interrogatory receptionist, passed the triage nurse and taken the course of antibiotics prescribed by the nurse practitioner, they finally see the stranger whose name is on their NHS card. At this point they are faced with a stranger, a doctor in name who knows nothing of their lives, their relationships or their experiences of illness and health, hopes, fears or expectations, someone who they have been deprived of the opportunity to grow to know and trust.

Continuity of care is being increasingly devalued and undermined, not only by the factors outlined above, but by the loss of personalised lists, subcontracted out-of-hours work, reduced home visiting, and increasing amounts of management and administrative responsibility. As we lose continuity we will lose the ability to form therapeutic relationships and act as holistic practitioners.

Increasingly patients are turning to alternative models of healthcare that attempt to integrate a more holistic approach. Whilst offering varying degrees of holism, none of these view the patient from such a range of perspectives as offered by a GP with the knowledge gained over years.

If we believe in treating patients rather than conditions and see each consultation as an opportunity to develop a relationship with our patients, then we will become more effective and more satisfied with our work. To do so involves a change in attitude towards each patient consultation and the right conditions to allow us to develop relationships with our patients”.


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Get rid of drunks in A & E – you can do it.

A drunk woman vomits, during a party in Zagreb...


A & E is not a place you want to linger –

and having to put up with drunks abusing staff and

making a racket is counter-productive.

So if you want to do something about it you will have the President of the  College of Emergency Medicine, Dr. Clifford Mann, right behind you/ Continue reading

White paper or blackout?

Conversation between doctor and patient/consumer.
Image via Wikipedia

A personal viewpoint

Andrew Lansley’s attempt to reform the NHS is foundering.

Announing he is getting rid of a layer of Administrators, those who know the high-ups in the NHS realise they didn’t claw their way up by pussy-footing around.  But will have ensured they have cast-iron contracts.  Or re-named their post so they step side-ways.

Sure enough, in our area we hear that 126 senior nurses, CNS, Physios, etc. are about to be ‘lost’.  But then they are ‘team leaders’ = administrators (for the tick box gurus), so that’s all right then.

Have you managed to see your GP recently? Or is the practice involved in ‘meetings’ about Lansley’s Pathfinder scheme, where GP practices are going to take over from PCTs?  If your practice is applying for the new scheme, you might only see a Locum drafted in whilst ‘your’ GP attends meetings.

White Paper

Reading the pages of the White Paper, I thought maybe I had missed the point.  To my simple mind it was re-inventing the wheel, but in a square form.  So I must have got it wrong, hadn’t I?

Then the Patients’ Association send a press release, saying:

  • The White Paper lacks detail on two important areas: complaints handling and the regulation and appraisal of individual healthcare professionals.
  • The PA is concerned that the logistics of delivering and implementing the proposals outlined in the White Paper have not been considered in full. There is a lack of detail on how the Government will engage with the public regarding the proposed changes. Many patients are despondent regarding the White Paper consultation process and believe that the ideas proposed are already being turned into policy.

And I realised that it wasn’t just me – thousands thought the same way:  it was the usual, typical waste of time devised by a politician.

The problem with politicians is they are appointed to Ministerial posts, with no previous experience.  In the run-up to the election, Mark Simmonds, MP, seemed to have grasped what the NHS needs.  He spoke very effectively about cancer treatment, and there was a feeling amongst those who heard him speak that he did know what he was talking about.

Come the new appointments after the election, and he is nowhere.

The Patients Association publishes its response to the NHS White Paper

On 11 October, the Patients Association published its response to the consultation on the NHS White Paper on the proposed restructure of the NHS
Our response is based on the results of our members’ survey and we would like to thank everyone who took the time to answer the survey – this is your response.

The White Paper has promised a more patient centric service which has been welcomed by the PA but you have expressed deep concerns over how this will be taken forward. Such statements about patient involvement in their own care cannot not simply be rhetoric but must translate into action.

You also have deep concerns on whether GPs are really the right people to hold the purse strings. GPs are trained as doctors not administrators and there is a worry that they will have to sacrifice clinical time to perform administrative duties.

There is a danger that GP commissioning will increase the postcode lottery. We are also very concerned that GP commissioning may lead to a conflict of interest which would lead to GPs seeking the cheapest care rather than the best care for their patients.

We hope the Department of Health will consider the views of patients thoroughly and thoughtfully.

Er – I can see yet another time-wasting ‘Consultation’ coming up – or, horror of horrors, Lansley may repeat that awful Away-week exercise he indulged in last summer.  On second thoughts, I think that was such a disaster he won’t.  Unless his ‘official’ photographer wants the work.  Yes, it isn’t only Cameron – every Government department has them.

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Good news, bad news on Breast Cancer survival rates

Breast cancer rates fall in the UK, but survival rate still amongst lowest in Europe

There was good news this week;  research published in the British Medical Journal (BMJ) showed that deaths due to breast cancer have fallen by a third in Britain since the 1980s, to 28.2 per 100,000 women, marking the biggest improvement in Europe.

And those at Cancer Research UK, Breast Cancer Care, Breakthrough Breast Cancer, etc. deserve a pat on the  back for the tireless work they have done to push these improvements through, and the doctors and nurses who have worked with and listened to them.

Improvements were put down to earlier detection and improved treatment methods.  The UK’s breast cancer screening programme was said to be partly responsible for the gain. However, after my article posted last week when Andrew Dilnot, Principal of St. Hugh’s College Oxford, said at the London Computational Knowledge Conference that we shouldn’t trust statistics – I started to think  (takes a lot of effort for me!).

Looking ‘behind’ the statistics, as Dilnot recommended, I find the steepness of the fall in death rates is possible, because the UK started off with such a poor record in comparison to Europe. In 1987-9 (starting point for the study), the UK had the highest death rates from breast cancer in Europe.  Even now, only Ireland, the Netherland and Denmark rank worse in the table published in the BMJ.

Mike Richards and other Dept. Health officials  don’t like it when we point out that other countries had better rates to start with, and why haven’t we yet managed to equal these?  They seem to think that Europe will stand still, and in their blinkered way they imagine we are only country that is advancing. And it isn’t just money that makes a difference – Lord Darzi frequently said  France spent the same amount overall per person on healthcare (care is funded differently, but he worked out French and Britons paid out same overall).

But as the Patients’ Association says, with cancer care in the news because of cuts in funding, it is also clear that the pressure must be kept on to maintain this improvement.

These figures show that things are improving.  People who would have died ten years ago are now alive, which is wonderful news. 

But if we want to improve, we must all push, agitate and question why aren’t we equal to Europe?

Response from Michael Baum

Professor Michael Baum has just emailed me:

” I’ve just carefully read the paper in the BMJ on trends in breast cancer mortality in European countries, since 1980.    ( Disparities in breast cancer mortality trends between 30 European countries: retrospective trend analysis of WHO mortality data base, Autier P, Boniol M, La Vecchia C et al, BMJ 2010, 341, 335).

There is also an accompanying editorial by Beral and Peto, explaining why mortality trends are more robust than survival estimates that are polluted by the over-diagnosis at screening on the one hand and the under-registration of new cases that are only picked up at the time of metastatic spread on the other hand.So slagging off the UK for having the worst survival in Europe might just reflect the over-diagnosis in screening intense countries like Sweden.

Interestingly enough, whilst England and Wales has the steepest fall in breast cancer mortality since a peak at 1988, Sweden has demonstrated very little fall in mortality. Furthermore the steepest fall in mortality was in the age group <50 in countries with none or low intensity screening in this age group.

These data reinforce my view that the fall in mortality in the UK is in spite of rather than because of screening. Yet the BBC lead on this feature interviewing a woman who claims her life was saved 4 years ago because her cancer was caught early at screening!!!”

Prof. Baum has a huge bio – just Google if you haven’t met him.  He was Principal Investigator in the ATAC trials,  and is probably proudest of being awarded the bi-annual St. Gallen Lifetime Achievement Award for Advancements in Breast Cancer Research- which comes with a fantastic watch which he wears.  He is also author of ‘Breast Beating’ – more info under Books category.

What we can do to improve survival

One effective way of getting cancer patients’ message over is to sign up for Breakthrough’s Westminster Fly In.  I work on committees for several cancer charities, and this was the most effective campaignwith which I was involved last year. Mark Simmonds produced powerful speeches at the event, highighting again and again how our cancer treatment lags behind Europe’s – and this year David Cameron and Andrew Lansley have repeated the message.  So congratulations to all those who got the message through to politicians – at last.

The next Fly-In takes place October 18th/19th.  If you want to get your teeth into a really effective campaign, contact them on www.breakthrough.org.uk, and if they accept you as a delegate (they pay all accommodation and expenses).  But be prepared to work very hard.

And make use of Volunteers

At a Europa Donna conference in Milan, I realised that other European countries are far more sensible than we are.  Same goes for the USA, where cancer patients have been incredibly effective in getting the message about breast cancer over to the American public.  They don’t employ consultants to undertake training for advocacy – they use cancer patients who train fellow patients, nurses, doctors, etc.   Having just finished a year of ‘volunteering’ and training courses, I have discovered that even though the NHS is getting rid of consultants, they have found a comfortable niche with some charities, and have the cheek to attempt to train us.

Surely British charities should look around at their volunteers, and pay them, instead of employing consultants?  Volunteers are the people who know what is needed, and many are very effective campaigners:  they are involved – they know what cancer is, and what is wanted.  Most of us have learnt to be articulate whilst fighting for treatment, and are much more effective than a consultant whose basic knowledge is based on theory, not practice.

I give warning that the next day course I attend run by a charity who has employed an outside Consultancy team, hired at vast expense, who use ‘training by rote’ and copy trendy ideas for ‘getting your audience involved’ is going to be in the epicentre of an erruption – caused by me.  I am not putting up with another a training day that started by asking a roomful of dedicated, knowledgeable campaigners who meet frequently on committees, to  “stand up and tell us what you would put in your suitcase”.  This nonsense  is liable to have a controlled explosion on its hands.  Me!

This is one of a raft of tricks used by consultant trainers to get everyone talking!!  Any cancer patient would know we don’t need excuses to talk!  If we have given up a day to help, we want to get on – not waste time.

Westminster Fly-In

But I shall be at the Westminster Fly-In – because the time we spend on this campaign is effective, and a good stepping stone to getting better care and improvement in cancer services.  Fellow campaigners have got their MPs involved and working for the cause – because MPs don’t need trendy-speak – they want solid facts.

Two years ago I was involved with another charity at the start of the National Cancer Survivorship Initiative (NCSI).  24 months later, it is still in the jaw-jaw doldrums.  As it is funded by the NHS there isn’t any urgency, except amongst survivors who are fed up with poor care, and if they can afford it go off to European medical spas.  The NCSI doesn’t have to report until 2012!  but I can’t wait that long to find out what I should be doing to survive after-effects of cancer drugs.

For report on last year’s Westminster Fly-in, and to get involved, see :  http://after-cancer.com/cancer-news-latest/how-to-lobby-an-mp/

Survivorship – will help improve out statistics

It is no good a doctor telling us at a Macmillan conference, “ten years after diagnosis 60% of patients are still suffering from side effects of cancer drugs”, if we don’t get help now.

Helping us stay on hormonal drugs (as they do in Europe) will raise survival rates, and improve our quality of life – rather than knowing we come off the hormonal drugs course because of side effects,  but doing nothing to help us stay on.

I want to leave off being a statistic, and get my after-side-effects under control.  If anyone feels they can’t wait either, do post a comment below.

For more information on recent Cancer Stats see article from BMJ:  http://www.bbc.co.uk/news/health-10944826

However, remember what Dilnot says and take the statistical table shown in this article with a pinch of salt.  I have been in Romanian hospitals, and have great admiration for their doctors and their training.  However, the country is poor, and I would question that their survival rate would be what is reported – UNLESS – as they can’t afford expensive drugs, would we be better off ditching drugs for our treatment?  Makes you wonder.