MINUTES OF THE PATIENTS FORUM MEETING HELD ON 12^TH NOVEMBER 2003 AT THE CONSUMERS’ ASSOCIATION

Present: Karen Thomson –Joint Vice-Chair (Diabetes UK); Paula Lloyd-Codner (Heart of Birmingham tPCT); Philippa Yeeles (Involve); Samantha Sharp (Alzheimer’s Society); Elaine Martyn (British Medical Association); Hew Helps (Chiropractic Patients Association); Brian McGinnis (L’Arche (UK); Nikki Joule (Neurological Alliance); Sally Gordon-Boyd (RSM); Gerda Loosemore-Reppen (Sign); Marlene Winfield (National Programme for IT); Angela Elohogiaye (NHS Information Authority); Carol Herrity (MENCAP);

Diana Basterfield – Patients Forum (in attendance)

Apologies: Sally Brierley (ACHCEW); Phillip Hurst (Age Concern); Ruth Taylor (Haemophilia Society); Peter Bainbridge (Stroke Association); Beverley Lawrence (Association for Improvements in Maternity Services); Mike Took (Rethink); Sheila Dane (LMCA)

Speaker: Rowena Daw from Mind: Update on latest mental health legislation and on Patient Choice and mental health (See appendix)

Minutes of last meeting

The minutes of the meeting held on 16^th July were agreed.

Patients Choice

Following on from the speaker, further information on Patient Choice and the work of the task groups was provided by Karen Thomson.

The need for information to be seen as a prime intervention was a theme running through the work of all the task groups. , Also whilst more and better information is needed, written information by itself is not sufficient, but is a tool to support the professional-patient consultation. People need to have information interpreted however, so that they can see how it applies to them as individuals.

Maternity:

· People would be able to go directly to a midwife or a careworker

· Information would be available in different media

· Social support, pre-natal screening and the type of maternity care

· Responding to women’s different needs and preferences, cultural differences

· Holistic approach with an aim to reduce mortality

· Some of the changes that would be needed were recruitment and retention, continuity of care in relation to the midwife, and a woman being able to build up a relationship during the antenatal period

· Holistic support through careworkers

· Language and interpretation services

Children and families

· Access to care in terms of navigating the system

· Choice of treatments

· Correspondence – who does it go to – is it to the professional first and then the patient gets copied in?

· How to re-engage with specialist care without the need for referral

· Respite and transition – the involvement of young people and the transition to adult services

· A key research message was that children often feel ignored and when they say they are in pain this was often trivialised or not listened to

· Choices being nested – dealing with one decision at a time

· The importance of focusing on children as this was their earliest encounter with the NHS

· Even young children can make choices – Birmingham Children’s Hospital had done some cutting edge work on this

Long-term conditions

· The right to re-assessment on a regular basis

· Care plans – a record of shared decision-making

· Education and training – the fact that people with long-term conditions and health care professionals need this to support self-management

· Involving carers and carers having a choice about the extent to which they provide care for the person (often at the moment it is just assumed that people will provide care rather than it being a negotiated choice)

· End of life or when the condition becomes distressing or intractable, that may be a period of several years, there is a need for a gear change in how services are delivered and the kinds of services delivered, e.g. from acute to palliative care, rehabilitation and respite. It is about giving people the right, not just in relation to the withdrawal of treatment but about having treatment to make them comfortable, overall quality of life. The right to die well versus the right to try to continue life, where that is appropriate.

· There is a pro-active seeking of views both with regard to severely disabled and older people. Leaders of health and social care organisations are responsible for making sure that is done.

Primary care

· Equity was the biggest concern, focusing on choice that drives equality, a precursor to choices about increasing capacity and focusing on areas of deprivation and exclusion: key choices are around access and availability, communication and interpersonal skills, help in navigating the system, information about services and outcomes and continuity of care

· Emergency care – that there is a single, simplified gateway for emergency care

· There is an array of points of access and people not understanding the differences between them. There is a need for an advisor for urgent health care.

· Having local information on the various options and how to get same day treatment locally based

Elective care

· The focus was on greater choice to access diagnostics

· Reconcile with published waiting times

· Reducing inequality

· In the context of choice at referral it makes sense to have greater choice of access to diagnostics

· The effects of hidden waiting, the fact that people are waiting a long time for the diagnostics and that is where the log jam is at the moment

A report on the work of the groups is due out within weeks.

Chair’s report

Patient Choice. The Patients Forum Management Committee has been in discussion with Bob Ricketts, Head of Capacity and Choice within the Department of Health about any work that we could do to fit in with their work on this.

Charity Commission. There had not yet been a meeting with the Commission but it was hoped that this would happen shortly. An email was sent out asking for testimonials. If people had not yet sent in a testimonial could they now please do so. (Note: the Charity Commission have asked for more information and have refused to meet, at least until this has been provided).

Ethics of working relationships. The Management Committee has been developing this policy and this would be circulated to members soon.

Topics for future meetings. An email was also sent out asking for topics. The ideas received to date had been: treatment centres; restructuring of the Department of Health and the relationship with the voluntary sector; a vision for the Department of Health; children are patients too, where do children fit into the wider health and social care agenda? option for change proposals around dentistry and the Audit Commission report on dentistry; People were asked to send in any further ideas.

Information exchange

Paula Lloyd-Codner (Heart of Birmingham tPCT): It was reported that as a PCT they were trying to get to grips with Patient Choice and the recent consultation and also building a relationship with the local network provider and the PPIF.

Philippa Yeales (Involve): It was reported that they were one step back from patient involvement, they were involving people in the research that informed the services. At the moment they were commissioning a number of pieces of research including an evaluation of eleven primary care research projects in London to look at specifically whether these projects, which had a remit to include an element of public involvement in the research, had been successful or not. They were also commissioning a piece of research to evaluate a group called Focus based in Devon. Focus provide advice and support to both members of the public and the research community and try to knit the two together to work better. They were also commissioning a piece of user led research looking at definitions of what is user controlled or user led research as this is considered a thorny issue and people get stuck on it. They were waiting for the True Report, about training for members of the public involved in research, and it had been a piece of scoping work looking at what training provision there was in the UK for people wishing to become involved in research – where could they get it, who was doing it and how good was it. Finally it was reported that they had completed the second edition of their briefing notes for researchers. The remit of this had been widened to include public health and social care. It provided examples of good practice to researchers in terms of how to involve the public in their work.

Samantha Sharp (Alzheimer’s Society): It was reported that they had sent out questionnaires to their members and to memory clinics in preparation for the NICE guidelines that would be developed and issued in December 2006 on dementia care. This would include drugs for dementia, the use of neuroleptics and also support for carers. They were now getting feedback on people’s experiences with drugs for dementia.

They were also in the middle of a series of briefing meetings with MPs on free personal care. This was re-invigorating their campaign in advance of the fifth anniversary of the Royal Commission Report – March 2004. They had also responded to the Patients Choice consultation.

Elaine Martyn (British Medical Association): It was reported that in the previous couple of months they had started developing a patient liaison group for the BMA and it would be composed of approximately 8 – 12 patient representatives. In the following few weeks advertisements would be going out in The Guardian and in The Times and would be sent to the Patients Forum membership with the aim of getting really good people to feed into some of the work they were doing to review, not just current BMA work, but also to help them to see what the issues were out in the community in relation to doctors and for doctors. The BMA had just put on its website the document produced by the Health Policy and Economic Research Unit on patient choice, involving carers, etc.

Hew Helps (Chiropractic Association): It was reported that they had been going forward with the College of Chiropractors on a lay advisory group with the first major meeting a month earlier. They had also been going forward with chiropractors on trying to encourage more people to use chiropractors and see the benefits of it.

Nikki Joule (Neurological Alliance): It was reported that most of the work they had been doing over the previous few months had been feeding into the NSF for Long-Term Conditions and enabling their members and people with neurological conditions to do that. Nikki reported that she would be leaving NA at the end of the year and an advert for a chief executive of the NA would be in The Guardian the following week. Their AGM the previous week had been very successful and several copies of their Annual Review were available at the PF meeting for people to take away.

Sally Gordon-Boyd (Royal Society of Medicine): It was reported that they were still working on interface with the lay public, (lay being non-medical). They were developing their website and had a feature called “Medicine and Me” and they were also hoping to bring out information booklets under that logo. There was a form on the website that asked people for ideas for meetings or publications and it was requested that if PF members could feed ideas into that it would be very useful. Sally would be interested to know if anyone received a response after entering an idea and whether they were happy with the response. The website address is: www.rsm.org.

Gerda Loosemore-Reppen (Sign): It was reported that the campaign “Reaching deaf minds” was continuing to make waves, especially with the civil servants who were working on the draft implementation plan for the Government consultation paper “Sign of the Times. ” This was long overdue in terms of the response to looking at specialist mental health services for deaf people and access to primary care services. They were confident that there would be a glimmer of hope as in two weeks the key civil servant would speak at a conference and the content of the implementation guidance might then be clearer. Sign was hoping to play a large part in this. It was also reported that details of a conference the following Thursday in Manchester on advocacy and deaf people had been circulated – a few places were still left.

Angela Elohogiay (NHS Information Authority): It was reported that they had recruited people to a public reference group to assist Project Managers in consulting patients. Training was being provided on how to do this.

Carol Herrity (MENCAP): It was reported that they had just completed the response to the Patient Choice consultation picking up particularly on the fact that people with learning disability did not get access to the same sorts of health services that other people do, that they were consistently overlooked. To help professionals to learn how to provide services to people with learning disability, MENCAP’s 2004 Learning Disability Week campaign would focus on health and try to come up with some of the answers to some of the challenges in their response to the Patient Choice consultation.

Brian McGinnis (L’Arche UK and a member of the Royal Society of Medicine): It was reported that the RSM would be holding a seminar in December and Brian had been doing some work for this looking into the very early history of learning disability and mental health. An 18^th Century advisor had said that the best way of getting hospital patients out quickly was by cruelty and starvation as they tended not to linger once that was done! With regard to the draft Mental Incapacity Bill, the last meeting of the joint committee was today, and it was thought that what would come out of that committee report would be a radically changed Bill. There had been a huge amount of common ground across 1500 representations to the committee from all quarters, although none from mental health patient groups. It was also reported that L’Arche had done some work with St.George’s hospital on bereavement among people with learning disability. The interesting conclusion was that it was better to train bereavement counsellors to help them understand people with learning disability than it was to train people who knew about learning disability in bereavement issues. This seemed counter-intuitive but there was a very clear benefit for the people concerned when they worked with those who really understood bereavement counselling.

Karen Thomson (Diabetes UK): It was reported that they had been very steeped in strategic planning in the organisation given that they had come to the end of a three year strategic plan, with a shift from a national to a local focus. Not a lot else was going on because of that. They had responded to the Patient Choice consultation. Ongoing work was the Nice Guidelines for Type 1 – these would come out probably early in 2004; home blood glucose monitoring where people in some areas were being restricted. This was partly because NICE Type 2 guidelines had been misinterpreted and also restrictions being applied to both Type 1 and Type 2 which showed a worrying indication that possibly there some GPs who didn’t actually understand the difference. It was hoped that the Department of Health would shortly produce some guidance on that.

They had also recently commissioned Dr. Foster to do a report on diabetes services and this was now available on the Diabetes UK website. This also provided people with an opportunity to find out about services in their local area.

It was also reported that Barbara Meredith and Karen sit on the Patient Information Advisory Group (set up by the Department of Health under Section 61 of the Health and Social Care Act 2001 looking at the use of patient identifiable information) and the first Annual Report would be out shortly and this would circulated by email.

Appendix

Patient Choice and Mental Health Legislation - Rowena Daw - Mind

Prerequisites to meaningful choice

• Available Services

• Consistent delivery

• Reasonable quality

• Primary care team training

• Information and support

Some key issues

Treatment choices

– medication, and choice of medication

– counselling and therapy ( talking treatments)

– exercise on prescription

– complementary therapies

Choice of professionals

Choice and the Mental Health Act

Compulsory powers for health and safety of patient or another person

and cannot be treated without compulsory powers and need for a therapeutic benefit

New Mental Health Act

Wide grounds for compulsion

– “Non resident”status

– therapeutic benefit removed

– wide definition of “mental disorder”

– “necessity” removed

– incapacity not required

– perception of risk to others

What choices does the patient have?

• Patient chooses the “nominated person” but their powers are reduced

• Consultation with the carer is subject to veto by the patient

• Duty to consult both carer and nominated person but no duty to consult the patient about treatment

• Advocates will be available

• Access to the Mental Health Tribunal

Treatment Choice

Special treatments

• ECT

• Psychosurgery

• Treatment for longer than 3 months

People before the criminal courts

• Diversion from the criminal courts

• Removal to hospital or into the community

Advance Directives/statements