Medics can speak a strange language!

Lovers of plain English would have delighted in being a fly on the wall last week.  Sitting in a Church office in Kensington, three of us from the local LINk were sitting disecting the latest QA (Quality Assessment) Reports from our local hospitals.  Faced with a jungle of NHS-speak, we suddenly realised we had the power to fling these back and ask for them to be written in plain English -so we did.  On the way we also mentioned that, try as we would, we hadn’t been able to find explanations for increase/decrease in use of mixed wards, and other subjects dear to patients’ hearts.

This gave us a wonderful feeling of power – which was increased when all three hospitals sent back a message thanking us for our participation!  But it remains to see if they have got the message when QAs come out next year.

One of our group made a list of some of the more weird words in the QAs, which included:

“cohort” – the scholars amongst us thought these were Roman soldiers

“symbiotic monitoring system”                                                                                                                                                                        “synbiotix database”  – we spent some time trying to work out if it were the same  – then gave up.

“clinical champion”  – this is awful NHS-speak that thinks if you give someone a nice name that will make them feel better

We are still puzzling over the meaning of  “the prevention of VTE is a national target and is a national CQUIN” “.

and/ “planned protocolised care pathways for example using the enhanced recovery programme methods”.  Er – what?

So it went on.  And these QAs are supposed to be to help the public understand how their local hospital has performed – or not, as the case might be.  But who will know, or understand?  Or are these learned paragraphs designed to fudge the issues so we can’t understand?  Or show off the fact that someone studied Latin at school?

N.B.  watch out if you ever see STAR-PUs on your notes. Apparently  it means

‘Specific therapeutic group age-sex prescribing units’.

Can’t wait to have that come up at a meeting, and ask all the PPs (pompous professors) the meaning of this phrase!

I asked to hear more explanations about NHS-speak, and back came this reply from a very senior person.  Unlike the NHS, I do mean it when I say something – so have protected their anonymity :

My personal horrors are “people we serve” which generally means the opposite.
“Challenging” is another which just means “more difficult”. “Mission statements” concept and content – should be banned in my view.

In fact, the more one thinks of words the more there is a general rule that the meaning in the NHS is the opposite of the real world e.g. “consultation” “involvement” “choice” and of course “complaints”
Cynically yours!

And in my view, they are  spot on!

(Extracted from 'Why can't the NHS speak plain English?')

Dignity Champions Update - May 2010

Hi Everyone,

Well this has been a really busy month for all 570+ members of K&C LINk, but particularly so for the LINk 'Dignity Champions.'  After the delight and gratitude with our success sunk in, we ran an induction training course for interested members on the concept of 'dignity champions.'  We ran through the 'dignity in care' campaign, the underpinning principles and our priorities in K&C namely nutrition and safeguarding.
Following on from the induction session, our helpful strategic partners in the Royal Borough of Kensington and Chelsea ran a safeguarding session for our 'Champions' and Central London Community Healthcare ran a similar session for us on nutrition.

We also had really helpful meetings, with thanks again to support from RBKC and CLCH, with possible pilot sites for both projects.

It ws then time for all the 'champions' to sit down and start drafting the assessment process for the sites. We are now inviting comment on these drafts...so if you would like to give us feedback on a dignity assessment for nutrition or for safeguarding please do get in touch!

Be in touch next month with the updated drafts and hopefully some dates for the pilot assessments!

Happy Friday,

The Dignity Champions

For K&C LINk

Cancer Care in Kensington and Chelsea

We are fortunate to live in the centre of London, where we have access to some of the most up-to-date treatment for cancer.  In the past few years cancer treatment has advanced rapidly, and oncologists have the diagnostic tools and drugs available that are were unknown even ten years ago.

But this does not mean we should be complacent. There is much still to be done, especially in the field of survivorship. I realised this when I developed breast cancer.  So this is very much a personal overview of the situation in our Borough. 

 Patients have complained that once they leave hospital, they feel ‘abandoned’; there is no-one to turn to for all the problems and worries that side effects of drugs can cause. They are expected to ‘store’ these up and ask their Oncologist when they have their six-monthly check-up. 

Patients are given strong drugs during chemotherapy treatment, then often handed hormonal drug tablets to be taken for five years.  A doctor described these as ‘min-chemo’, and the side effects of these drugs are something that has caught the NHS on the hop.  Side effects can cause temporary blindness, very heavy hot flushes which interrupt sleep, skin lesions that leave a bloody trail all over a body, and many other distressing symptoms.  Patients can be bullied, with specialists brushing side effects aside with, “it’s your age”.

A recent NHS survey produced the horrifying statistic that over 60% of patients came off their drugs – either openly or on a “please don’t tell doctor that I throw the pills away” basis.  A follow-up survey done in Irish hospitals showed that those coming off the pills with a higher percentage of recurring cancer.

Cancer support centres do a lot to offer patients support in handling problems, and we are able to make use of Maggie’s at Charing Cross, Cancerkin at the Royal Free, the Paul D’Auria Cancer Support Centre at Clapham Junction, The Haven in Fulham and St. Mary’s, Paddington. 

You may notice that there is a huge hole in the centre of the Borough, and this needs to be addressed.  There is a Macmillan centre at Chelsea and Westminster Hospital; this does a fantastic job with limited resources, but it is small and crammed into a corner of the ground floor.

However, David Cameron promised that cancer services would be ‘ring fenced’, and the Dept. Health is working on a scheme to give every cancer patient a ‘passport’ detailing all the treatment they underwent before they were discharged.  It is suggested that this is taken to their GP, who then has all their notes for reference, and can take over care of that patient, dealing with side effects and overseeing their on-going care. 

There are major flaws in this scheme, including :

• Doctors are only given 6 QOFs (these are the points that go towards their payment for services provided to the NHS) for seeing cancer patients.  Diabetics and other conditions are worth up to 90 QOFs.  When London surgery costs (rent, rates, staff transport, higher wages, etc) are taken into account, you can see that doctors may not allocate costly resources where there are few QOFs.
• Most doctors are not given any training in dealing with complex needs of cancer patients.

Prior to the election, Mark Simmonds (a Conservative spokesmen for health), loudly condemned the UK’s shameful record of post-cancer care and survival, when compared with other European countries, especially France.  He said his party wanted to aim for the Swiss screening outcome (they have just bought down waiting time for screening from FIVE to THREE days – we aim for 14 in the UK). 

Both of the Borough’s MP, Sir Malcolm Rifkind and Greg Hands, have supported Breakthrough Breast Cancer’s efforts to reduce screening waiting times, and to restore Lymphoedema treatment services in the Borough.  Now the election is over, we need to build on this support, and, looking towards the future, forge links with French hospitals to learn from their cancer treatment. 

I was lucky enough to be invited to the AGM of a French company that makes products helping cancer patients deal with side effects from drugs.  Evolife products are undergoing clinical trials, but many are already prescribed to French patients – and if we learnt from them, patients could be helped to stay on drugs, and profit from the life-prolonging benefits of these powerful agents.  Eurostar goes from up the road into the heart of Paris, and personally I would like to see a lot more to-ing and fro-ing between our medical teams. 

However, there is a difference in our cultures.  I found this out when I asked a group of French Oncologists if their hospitals had mixed wards.  Gasping with horror, they asked “why would you want that?”  And I had the hardest time explaining that no, I wasn’t a sex maniac – we did put men and women in the same ward sometimes (something I am working hard to eradicate).

After my treatment, I started a website called Having Fun After Cancer.  Many of the treatments I received, particularly when I went to France, Germany and Italy, were fun as well as providing health benefits.  Massages, skincare, and products that help mitigate side effects are provided as part of their health care.  Often these are provided free by  the state health system, rather than relying on charities. 

Just before he retired, Lord Darzi mentioned that, taking insurance and taxes together, the French paid about the same as we did for the NHS, so using funds carefully it should be possible to work towards providing  the same level of care, and hopefully increase our life expectancy after cancer. 

The above article reflects my own opinions; it is not an official LINk opinion – only my own as a patient who has been very grateful for my care, but who would like others to have access to the same treatment I was given, but in many cases had to fight for this.  It is too early to predict what will happen, but for a personal view of the political situation, see http://after-cancer.com/cancer-news-latest/will-the-nhs-under-the-conservative-coalition-suffer-or-prosper/

The 2011 Census needs YOU! Help run the Census

Vacancy: Census Area Managers in Kensington and Chelsea
Employer: Office for National Statistics, 2011 Census
Salary: Paid at £18.19 per hour
Employment period: 45 week contract, August 2010 to June 2011
Closing date: 2^nd May 2010

On behalf of the Office for National Statistics (ONS) Capita is now recruiting for Area Managers to help run the 2011 Census.

What does the role involve?
Area Managers will be responsible for managing
and co-ordinating the census operation in a large target area . Their primary focus will be to ensure the maximum number of people return their census questionnaires. They will need to establish links with local authorities and community groups and engage with specific target populations. He or she will be the primary contact for all local mediaenquiries in their area and will act as local media census spokesperson, when appropriate. Media handling training will be provided. Area Managers will also be responsible for managing and monitoring a team of up to 15

Census Co-ordinators who in turn manage teams of up to 15 field staff.

What is the census?
In England and Wales the census is planned and carried out by the Office for National Statistics (ONS). A census in England and Wales is run every ten years. Every household is asked to complete a census questionnaire. This information is used by ONS to provide population estimates which government, local authorities and other organisations use to fund, plan and deliver public services such as healthcare, education, housing and transport.

To apply go to www.censusjobs.co.uk

For further information please contact Melanie Marshman , Royal Borough of Kensington
Tel: 020 7361 2262 or  E-mail: This e-mail address is being protected from spambots. You need JavaScript enabled to view it