Working with other patient organisations

Ian Beaumont, Director of Communications, Bowel Cancer UK spoke of successes in making landmark case history in getting life-saving cancer drugs.  A collaborative approach from clinicians, patients and lawyers had meant patients with bowel cancer could access drugs that were needed for their condition.  There had been cases where time had run out for patients where they had been denied vital drugs, often by the time cases went through the appeals process it had been too late.  Maria spoke of her mum's experience and diagnosis with bowel cancer.  Diagnosis and treatment was quick and for 18 months Patricia was able to lead a normal life.  Sadly the cancer returned and following a liver resection Patricia contracted MRSA.  Something Maria felt the charities could work together on was the raising awareness of the importance of patient warming for bowel cancer patients who required surgery.

The patient warming technique, known as 'normothermia' was recommended by NICE, but not followed by all Trusts.  Only 25% of Trusts used normothermia to reduce the risk of surgical site infection.  The method of patient warming was also an area of concern; some methods were believed to be safer than others.  MRSA Action UK were concerned about the practice of blowing warm air over the patient during surgery, as this could contribute to the risk of blowing bacteria into the wound, whereas using warming blankets would appear to be safer.

Ian circulated his patient campaign pack and ten top tips from Bowel Cancer UK, these covered checking for symptoms; risk and prevention and eligibility for screening.  The pack also contains a patient's bill of rights telling the patient what they are entitled to.

Maria spoke of the tragedy at Stafford Hospital and of members who had been affected, Ian suggested that if there are groups campaigning then it can be useful to campaign together with a larger voice, this often works well to get the message out there, particularly at the local level.

Using PCTs to campaign

Norman Evans is a consultant in Public Health.  In terms of campaigning and lobbying at a local level, Directors of Public health, Chief Executives in PCTs and commissioners had a big influence on Acute Hospital Trust budgets.  Chief Executives in Acute Trusts were responsible for signing off infection prevention and control policies.  Better information on infection rates should also be available from local Health Protection Units, and they generally wish to discuss findings with you.  MPs are also very influential and are a good source to lobby.  The latest edition of CMO update gave a good editorial on the Health & Social Care Act 2008.   Maria raised the Chief Medical Officer's annual report and its focus on alcohol - not supported by the government.  How do we get the Chief Medical Officer to continue the focus on healthcare associated infections.  There was a section on antimicrobial resistance that had little punch despite a picture of boxing gloves appearing at the start of the chapter titled 'Anitmicobial Resistance - Up against the Ropes' featuring a pair of boxing gloves hung-up.  Was this symbolic of there being ?no fists in these boxing gloves? and the focus declining?  Maria said there was one notable graph in this chapter that related to a campaign on antimicrobial prescribing in Belgium, the trend in resistance was going down since the judicious prescribing campaign had begun.

How do we get the Chief Medical Officer to keep healthcare associated infections high on the list of priorities in his annual report so that people's minds remain focussed on the issues.  It was felt that using MPs and PCTs was a good way to keep the issues high on the agenda. 

Campaigning in Parliament

Lord Toby Harris was active in health.  He had been in the House of Lords for 10 years, a Director of Community Health Councils for 12 years, was Chair of the Local Government Association at the time of implementing Care in the Community and The Children Act, and was now Chair of the Metropolitan Police.  He had long standing experience in campaigning.  There were two types of campaigning, either where you have specific objectives or you just want to give the government or government departments a hard time. Were we looking to change the climate of opinion and engaging in a continuing debate on 'we've got to do something about this'. 

-         Inquiries - Health Select Committee.  Maria said MRSA Action UK had made a written submission to the Public Inquiry into Patient Safety as an organisation and individuals had also made submissions, but no patients or their representatives had been called, it appeared to be all the professionals who were giving evidence.  Toby said we still may be called, unless we have been specifically told we are not being asked to attend then this could still happen.

-        All Party Parliamentary Group on HCAIs, they do media releases on work, or techniques and technologies

-         Early Day Motions help to take debate forward

-        Parliamentary questions, you can either get your MP to put a question or if you know there is an MP with an interest in health your organisation can approach them to raise questions.  In the House of Lords it's a seven and a half minute slot and there are four a day.

Campaigning with the media

In terms of effective use of Newspapers Emily Nash the Editor at the Daily Mirror says she looks at press releases for about 3 seconds, there are so many, 40% are deleted straight away.  You need to get the timing right, and there are only two themes that the newspapers will be interested in, human interest and conflict.  You need to get the message across in the first two lines, the headline and solution, it was important to use simple language, for example regional variation is better described as 'postcode lottery'.

Sunday papers liked more detailed and analytical opinion and ideas.

Consumer Health stories deal with unfairness and inequity, wasted money - how will our way save money. There were two styles, conflict and contradiction versus policy and influencing, wanting policy change, both were appropriate depending on the circumstances.  Websites and using social networking can be useful, the function of an organisation's website was important.

A general discussion took place and it was clear that we needed to keep up with the campaigning to make sure that government did not take the focus away from healthcare associated infections, it was felt that we had all helped to raise the game but we couldn't afford to sit back, there would always be the need to keep the pressure on and respond to emerging issues.

The next event would be in Parliament on 1 April 2009, Derek Butler would be speaking:

From the Office of Dr Brian Iddon MP

House of Commons

Review of Healthcare Associated Infections:  Are we doing enough?

4-6pm on 1^st April 2009

Committee Room 8, House of Commons, Westminster

I would like to invite you to participate in a review that I will be Chairing on the progress being made towards meeting the objectives of the Government's 'Clean, Safe Care' policy and to inform future developments.

In particular, I am interested to know how avoidable infections, such as MRSA bacteraemias and C difficile but not exclusively these, are being addressed.  I would like to discuss the level of public and patient awareness of HCAIs, high-risk groups in different therapy areas, the role of the advocacy community and whether sufficient research is being focused on preparedness for emerging bio-hazards.   I anticipate that recommendations for further progress towards 'No Avoidable Infections' will emerge from the discussion. 

Your perspective will be invaluable. 

The meeting will be captured and issued as a report.

Yours sincerely

Dr Brian Iddon

Member of Parliament for Bolton South East  

If you or someone you care about has been affected by a healthcare infection and you wish to discuss this with us, please contact us at info@mrsaactionuk.net