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MINUTES OF THE PATIENTS FORUM MEETING HELD ON 18TH JANUARY 2001 AT THE CONSUMERS’ ASSOCIATION

 1. Present:  Clara Mackay – Chair (Consumers’ Association); Jonathan Ellis (Help the Aged); John Tait (Residents and Relatives Association); James Appleyard (BMA); Mark Paulson (GMC); Irene Mackay (The Coeliac Society); Geraldine Amos (Home from Hospital); Marianne Rigge (College of Health); Alison Soliman (Dementia Relief Trust); Micky Willmott (Age Concern England); Gerry Mahaffy (Princess Royal Trust for Carers); Les Hill (National Association for Patient Participation); Brian McGinnis (MENCAP); Penny Banks (King’s Fund); Emma Bartlett (Diabetes UK); Nikki Joule (Neurological Alliance); Diana Basterfield (in attendance, Patients Forum) 

2. Apologies: Judy Wilson (LMCA); Rohana Mohammed (LMCA);  Eileen Nelson (Royal Pharmaceutical Society); Debbie Smith (Anchor Trust); Barbara Brewster (Sickle Cell Society); Eva Jacobs (Patients Forum Treasurer); Barbara Meredith (Age Concern London);     

3. Minutes of the previous meeting:  Agreed.

4. Matters arising:  on agenda or in Chair’s report 

5. Clean Hospitals Project:  Clara referred to a letter she had received from NHS Estates about their Patient Environment initiative and the Clean Hospitals and Food initiative where they had requested input from patients groups.  She felt it was important that a wide range of patient interests were represented and put forward.  There were specific issues relating to e.g. the elderly, people with mental health problems and people with learning disabilities.   She had felt it would be very useful to have a discussion with Patients Forum members about these initiatives and to take the key points from the discussion to the forthcoming meeting with NHS Estates, which several members would be attending.  She had asked Jonathan Ellis to kick off the discussion by doing a presentation on the Help the Aged campaign around “Dignity on the Ward” as this was particularly relevant and a good starting point for discussion.

Jonathan said he was the Campaign Organiser for the “Dignity on the Ward” campaign.   In the context of the Clean Hospitals work he thought it would be useful to give some of the background and to use the campaign as a starting point for the new initiative.    Help the Aged launched the campaign in January 1999 and from the beginning they had wanted to make sure that what they were campaigning for was what mattered to older people themselves.  They had spoken to older people all over the UK about their experiences of hospital care and listened to their ideas about what could be done to improve things.   One recurring comment was “let’s bring back the matron.”  This was far from being sheer nostalgia.  As they had probed into the reasons for this they had discovered that one of the underlying issues was standards of cleanliness.  In the two years that the campaign has been running (it comes to an end in February 2001) they had received well over a 1,500 case studies from older people, their relatives and their carers, which had helped to identify the key issues that people want Help the Aged to campaign on.  Fairly high on the list of priorities was standards of cleanliness and hygiene, higher even than the continued use of mixed sex wards.  People had described their absolute disgust at the state of some wards.     

One of the biggest clinical challenges facing hospitals was the management of hospital-acquired infection.  Last year, before the NHS Plan was published, the National Audit Office had estimated that there were some 100,000 infections occurring within the inpatient population every year.  In other words, almost 1 in 11 patients had acquired an infection while in hospital at a cost of many hundreds of millions of pounds.   Not all cases of infection arose from poor standards of hygiene and cleanliness but the National Audit Office had said there was certainly room for improvement in a number of different locations.    The Clean Hospitals initiative could, then, save the NHS considerable sums of money and new guidance on infection control was currently being developed.     

The proposals were set out in Chapter 4 of the NHS Plan – Investment in NHS Facilities.  This talked about getting the basics right and set out a programme of work that was being developed and overseen by NHS Estates.   The Plan acknowledged that patients had perceived a major deterioration in cleanliness and provided:  £30 million of immediate investment; an immediate nationwide cleanup campaign; a series of unannounced inspections; new standards of cleanliness that would form part of the permanence standards framework by the end of the year 2000; new authority for Ward Sisters and Charge Nurses to take responsibility for cleanliness and moves to encourage domestic staff to be seen and treated as part of the wider ward team, rather than as an auxiliary service; renegotiations of cleaning contracts with external companies by Trusts would reflect the new responsibilities by ward staff and a member of the Trust board would be nominated to take overall responsibility – the so-called “Environment Champion.”  There would also be a new role for Patients Forums in inspecting facilities for their standards of cleanliness.  Finally, standards of cleanliness would be included in the rolling programme of reviews and inspections that the Commission for Health Improvement would be carrying out.    

The previous day (17th January) the government had announced an additional £31 million on top of the £30 million that had been allocated in summer 2000. This would seem to indicate a certain level of commitment. 

Immediately following the NHS Plan, a letter was sent to all Chief Executives outlining exactly how much of the one-off additional money they would be getting, based on the size of the hospital under their management.  The letter also outlined the action they would now be expected to take - with tight deadlines.    

There was a new programme, the Patient Environment Programme, spearheaded by NHS Estates, set up to look at the environmental issues and to implement many of the components of Chapter 4. It was designed to provide hospitals with support and develop a framework within which standards could be raised.

There were a number of overall objectives including creating hospital environments that would be well-regarded by patients, visitors and staff, providing patients with opportunities to give feedback on the environment, highlighting and enhancing the status of staff, giving control over cleanliness, setting up a system that evaluated current and future standards and providing hospitals with best practice advice etc. 

The programme’s priorities for the 2000 –2001 financial year involved establishing a framework for putting cleanliness on the performance agenda.  There were Patient Environment Action Teams drawn from a list of over 100 NHS professionals, representatives from commercial organisations providing cleaning services to the NHS, CHC members and Patients Association representatives.  Each team was made up of three people and was responsible for a schedule of hospital visits.    These teams had been visiting hospitals since last August to review the action plan that the hospital had drawn up and to see how well they were doing.

The focus of these inspections was the patient’s perspective rather than technical standards of cleanliness.  

By the middle of January 700 hospitals had been visited.  The Patients Association reported that 250 were given red status, 291 were classed as yellow (progress developing) and only 158 met the criteria for agreed

status.  The Patients Association, in particular, was concerned about the level of variation in standards of cleanliness around the country and also within hospitals.  There was alarm that so many hospitals were so obviously failing to provide basic standards of cleanliness and hygiene.  One hospital in each region was awarded beacon status and would serve as a reference for other hospitals.  Those beacon hospitals would also be involved in developing the new national standards over the next couple of months.  Some of the areas being considered were:  entrances and reception areas, internal decoration, the use of signs, visitors toilets, the number of smells, internal cleanliness, quality of furniture, quality of linen, presentability of support service staff, grounds and gardens, external cleanliness, external decoration, car parking facilities and the general overall appearance.   Each of these 14 aspects of cleanliness and tidiness had minimum standards against which hospitals performance would be assessed.    

Jonathan said the process was moving incredibly quickly and by April this year it was planned that all of the basic remedial action would have been taken, painting and decorating programmes should have been finished, broken furniture should have been replaced and hospitals should start to feel more welcoming.  On top of this would be a national network of “Environmental Champions” working to promote best practice and also to develop the standards that would be part of the national performance programme.  

The second year of the programme, starting in April, was going to focus on the further development of national standards, developing the traffic light system of assessment, establishing a programme of training and development for support staff and managerial training for supervisors, including ward staff who were now taking on this extra responsibility.  The previous day (17th January) the DH had announced plans to implement the proposal that ward sisters be given authority to deal with standards of cleanliness, including the ability to spend up to £5,000 from the budget on painting and decorating, furnishings etc. They would be able to buy direct from suppliers.  

Jonathan concluded by saying that Help the Aged thought good progress was being made but would like to see a broader interpretation of “environmental improvement.”  For example,  the Royal Institute of British Architects had been doing a lot of work over the last 18 months with NHS Estates looking at developing therapeutic environments and at the design of hospitals.  Such ideas were largely missing from the current programme.     

Following discussion, and members giving examples of some horror hygiene stories, Clara referred to the letter she had received from NHS Estates.  This had asked two specific questions which she put to the meeting: 

1.  Was there sufficient interest in the work of  NHS Estates to form a small working group called the Patients Representation Group, to act as a ‘sounding board’ to discuss the development of improvements to the patient environment?             

 The meeting agreed there was sufficient interest.    

 2.  How can NHS Estates engage the members of your organisation to construct appropriate channels or feedback on our work? 

Clara said she had already received reports from some organisations on projects they had undertaken; she suggested that through the Patients Forum, such reports be collected and forwarded to NHS.  In turn NHS Estates be asked to provide feedback on the work they were doing.   She added that she would take the points raised during the meeting to the NHS Estates meeting.  She asked organisations interested in joining the NHS Patients Representation Group to get in touch with her. 

6. Chair’s report: 

(a)  Patient and Public Involvement Project:   Marianne Rigge, Judy Wilson and Clara had been working together to put a proposal to the DH to get some funding to do some scoping work around the need for a national patient body.   Alan Millburn in his speech on the Bill had said that he supported this work.  Initially the budget had been very small, £10,000 but today (18th January) she had heard that the Department had increased this to £20,000.  Clara felt this was partly because the Department wanted the work completed quickly and this would enable extra resources to be brought in.   The current position was that individuals and organisations were being asked to participate in an Advisory Group.   The letters had only just gone out so she felt it would not be appropriate at this stage to mention names.  In addition to the Advisory Panel and the Steering Group, it had been made clear to the Department that the Project was committed to consulting widely and that there would be many opportunities for individuals and organisations to provide input.  Once everything was in place, a briefing package would be circulated to all members.  The timescale for the completion of the report was the end of March.  

(b) Communication:  Clara said that with the speedy implementation of the NHS Plan and people being co-opted onto boards, task forces, working groups etc there hadn’t been time to put in place communication channels to enable information to be fed in and fed out.   This made it very difficult to get a grip on how the implementation of the Plan was coming along.   She proposed that after the Patients Forum conference there should be a Patients Forum project looking to develop appropriate communication channels.  This was agreed by the meeting.  

 (c) Health and Social Care Bill.  Clara circulated notes from two meetings held at the DH earlier that week with members of the Bill drafting team covering social care and patient representation.  She also provided notes from the meeting held at the Consumers’ Association the previous Friday (January 12th); this had looked at the social care aspects of the Bill, the pharmaceutical pilot schemes, the public private partnership and patient information.  She also included notes from a meeting of patient groups held at the BMA earlier that week hosted by POPAN and the BMA Foundation for Aids where concerns had been expressed about Clause 59 of the Bill around consent and confidentiality and new powers for the Secretary of States to override Common Law.  

In discussion members expressed serious concern about any moves to override patients’ power of consent and the misuse of patient records.   Article 8 of the Human Rights Act – the right to privacy – was referred to. 

Clara asked Jonathan Ellis to briefly outline the parliamentary process.   He said that the Standing Committee was meeting for the first time that day and the membership was now known. The Committee would meet twice a week between 18th January and 8th February (7 meetings).  The first meeting would look at the order in which clauses would be taken and set the programme with the less contentious clauses likely to be taken first.   Issues relating to patient representation and CHCs would be likely to be discussed at the meeting on January 30.   He anticipated that the Government would want the Bill to have cleared the Commons before the General Election.    

Organisations putting forward amendments to the Bill or lobbying MPs then gave brief outlines of the issues they were covering.  The meeting agreed that Clara should send members of the Standing Committee the original Patients Forum briefing on the Bill with additional points on social care and patient information.   In her original covering letter to the Secretary of State she had said that many member organisations had particular expertise in areas covered by the Bill and that MPs should be encouraged to draw on this.    She also suggested that amendments being put forward by member organisations could be put up on the Patients Forum website.  

(d) Guide to the parliamentary process.  Clara said that the current Bill had drawn attention to the need for an “Idiot’s Guide” to the legislative process and how it can be influenced.  Barbara Meredith had recommended a UK website that provided much of this information:  www.citizensconnection.net.  The following excerpt on parliamentary bills has been taken from the site:

“The stages of a parliamentary bill

Assuming the bill is first brought in to the House of Commons it goes through the following stages:

  •       first reading: a purely formal stage which starts the life of the bill

  •       second reading: the first time the bill is properly debated and its first hurdle

  •       committee: a small group of MPs considers the bill in detail and possibly makes amendments

  •       report: the bill is returned to the House of Commons for further consideration, particularly of committee amendments, and may be further amended

  •       third reading: an often purely formal stage after which the bill is sent to be considered by the House of Lords.

A similar sequence is then followed in the House of Lords.

 

If the Lords amend the bill then it goes back for the Commons to consider the amendments. If the Commons does not agree to the Lords changes, or does so with amendments, the Lords again consider the bill.

Often the Lords will give way to the view of the Commons. However, if they do not and agreement cannot be reached the bill will be dropped and won't become law, although the Parliament Act 1949 allows for the House of Commons to get its own way in certain circumstances.”

 (e) Date of next meeting: 

Thursday 18th March
Consumers’ Association
2 Marylebone Road
London NW1

 

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  Last updated 14/5/2001   © The Patients Forum 2001