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MINUTES OF THE PATIENTS FORUM MEETING HELD ON 19^TH JULY 2001 AT THE CONSUMERS’ ASSOCIATION

Present: Francine Bates – Vice Chair (Consumers’ Association); Ruth Taylor (Haemophilia Society);

James Appleyard (BMA);  Micky Willmott (Age Concern England); Marion Chester (ACHCEW);

Tina Funnell (Primary Immunodeficiency Association); Kristin McCarthy (Doctor Patient Partnership); Rachael Kenny (Action on Elder Abuse);  Geraldine Amos (Home From Hospital Care); Aine Dolan (POPAN); Ruth Berry (Alzheimers Society); Rohana Mohammed (LMCA); Marianne Rigge (College of Health): Gerda Loosemore-Reppen (RNID);  Jo Hampton (GMC); Mike Took (National Schizophrenia Fellowship); Susan Savage (UKCC) 

1.      Apologies:  Clara Mackay (Consumers’ Association);  Barbara Meredith (Age Concern London); Alison Soliman (Dementia Relief Trust); Jack Summerside (Terrence Higgins Trust); Judy Wilson (LMCA); Mikki Joule (Neurological Alliance); Eva Jacobs (PF Hon. Treasurer); Les Hill (NAPP); Jonathan Ellis (Help the Aged) 

2.      Minutes of the last meeting 

The minutes of the meeting held on May 24^th, 2001 were agreed.

3.      Matters arising

• Preparations for AGM

A flyer had now been produced and would shortly be circulated along with an invitation. The speaker in the open part of the meeting would be Dr Andrew Ferguson from the GMC and he would be talking about “A time to die? – Withholding and withdrawing life-prolonging medical treatment.”   

It was reported that the Steering Group of the Patients Forum had been discussing making changes to the PF constitution to change it from an unincorporated association into a company limited by guarantee.  It had been hoped that this item would be on the agenda at the AGM.  Following the Steering Group meeting earlier in the week, however, it had been decided that further research was required into the type of constitution most appropriate to an umbrella organisation.  This item had, therefore been deferred to a later meeting.    

·    NHS Confederation Conference and Exhibition – Manchester July 4-6, 2001 

       Diana circulated a photograph of the stand showing the Patients Forum event on 4^th July. She reported that the opening session of the Conference - on the theme of leadership -  given by Benjamin Zander, the Conductor of the Boston Philharmonic Orchestra, had had a powerful effect on the delegates.  She had enquired if video copies were to be made and, if so, would circulate it to members.  Few members attended the NHS conference or sent materials and we may need to review  the approach for next year.     

4.      Guest Speakers: Dr. Marlene Winfield, Head of Patient and Citizen Relations, NHS Information Authority

       Chris Shovelton, Secta Partners for Change                                                                                                                                       

       “Patient Confidentiality in the Technological future”   See appendix for
                                                                                        report 

5.      Information Exchange 

Ruth Taylor (Haemophilia Society) reported that the HS had published a book for women on bleeding disorders.  

James Appleyard (BMA) reported that, following on from the minutes of the previous PF meeting, the BMA Council had met the previous day and agreed to set up a mechanism to try to involve patients more in their deliberations.    

Micky Willmott (Age Concern England) reported that the focus of her work at the moment was the NSF for Older People.  

Marion Chester (ACHCEW) reported that issues for consultation were not always brought to the attention of organisations but rather simply put up on websites.     She and her colleagues regularly searched the relevant sites to check which consultation documents were out and which were relevant to ACHCEW.   She offered to send alerts to the PF for circulation to members.   This was accepted.  

Tina Funnell (Primary Immunodeficiency Association) reported that she was one of the few lay members of the new shadow Nursing and Midwifery Council and offered to act as a conduit back to that Council. 

Susan Savage (UKCC) reported that they were looking at the draft code of professional conduct.  

Rachael Kenny (Action on Elder Abuse) reported that they were doing some work with the London Ambulance Service to raise the awareness of staff to elder abuse so that when they responded to emergencies they couldalert other services if they suspected it was occurring.   They were also working with the W.I. who had recently agreed to lobby the government on the training of care workers.    They were also working on standards for the training and education of domiciliary care workers around elder abuse. 

Jo Hampton (GMC) reported that she had been working on a patients reference group  - following on from their work on revalidation.    She also reported that GMC reforms were on going. 

Mike Took (NSF) reported that he had brought copies of their latest carers leaflet.  It contained a charter for carers and also discussed confidentiality and information sharing.   NSF was considering its policy on the liberalisation of cannabis – cannabis can actually trigger mental illness.     The government had decided to limit therapeutic earnings to one year for Incapacity Benefit and NSF were taking action on this. 

Gerda Loosemore-Reppen (RNID) reported that standards for Social Services for deaf children would be published in the autumn.      RNID was involved in a number of implementation and executivecommittees that were piloting universal hearing screening of newborn babies.   

Rohana Mohammed (LMCA) reported that they were in negotiations with the Department of Health on the NSF for long-term conditions.  They were still awaiting the Expert Patient Task Force report.  They were likely to be starting a campaign on prescription charges and might be working jointly with NACAB on this.  

Ruth Berry (Alzheimer Society) reported that their major area of work was the NSF for Older People, particularly in trying to support their local branch members on implementation committees.  They were also involved in the NICE consultation being run by the Consumers’ Association.    They were also working with independent homes associations and other groups on the issue of long-term care and the problems around  residential care.  They were hoping to launch a big campaign as a consortium with others to raise the issue of bed blocking and carers.     

Geraldine Amos (Home from Hospital Care) reported that they were very concerned about intermediate care.  She had spoken to representatives of two independent hospital organisations in Manchester the previous week who had been convinced that the NHS would not pay them the money they required to supply rehabilitation services.         Geraldine also proposed a vote of thanks to Barbara Meredith from Age Concern London for producing her excellent policy notes for the Patients Forum over the last few years.  

Francine Bates (Contact a Family) reported that they were about to engage with the NSF for Children. The scoping exercise had already begun, so too the consultation meetings.   Contact a Family’s approach to the NSF for Children was (a) it should include disability and social care (b) it should include rare conditions otherwise a group of children would be ignored (c) it should include parents’ input – and they would be lobbying strongly for this. 

Date of next meeting  

Thursday 13^th September (AGM)

 APPENDIX

 Patient Confidentiality in the Technological Future

 Speaker:  Dr. Marlene Winfield, Head of Patient and Citizen Relations, NHS Information Authority

 The main areas of the NHS Information Authority’s work include: 

·                  the electronic health record

·                  linking GPs, hospitals, pathology labs, pharmacies via computer 
             and eventually linking them to patients

·                  developing analytical tools for comparing the outcomes of
             treatments and health care -providers

·                  producing National Information Strategies

·                  making latest knowledge available through the National electronic
             Library for Health

·                  providing services to track people through the NHS (patient
             numbers, baby numbers)

 The Authority also works on data coding and quality standards.  Its Ways of Working programme devises training to enable health care providers to make the best use of IT to deliver better care, including working in partnership with ‘information rich’ patients.

Examples were given of how these services might in future change the way care is delivered and devolve some care to the willing patient. 

The Data Protection Act and how it affects the NHS was looked at briefly and the thinking behind Clause 60 of the Health and Social Care Bill.  Other topics covered included: 

·                  some of the difficulties of meeting incompatible needs

·                  delivering seamless services through information sharing

·                  gathering information to compare performance of health care
                   providers (while at the same time giving the highest priority to patient
                   confidentiality)


Information about a pilot in South Staffordshire that is exploring ways of getting patient consent to data sharing was also provided.

Electronic Bookings Project

Speaker:  Chris Shovelton,  Secta Partners for Change

The slides from this presentation are only available in paper format.

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