Patients Forum Conference 2005

DELIVERING HEALTH FOR ALL: PUBLIC HEALTH AND SOCIAL INCLUSION

22 February 2005

   

Tackling inequalities and helping people take charge of their own health were at the heart of the Patients Forum Conference 2005. Speakers talked about policy developments in relation to the public health White Paper Choosing Health, as well as the wider determinants of health and work around social exclusion.

Jonathan Ellis, Patients Forum Chairman, identified two key themes:

He said: ‘It’s about giving people the control and the power to make improvements to their health on the basis of equality of access and equal treatment by services.’ 

A key driver for change is the Choosing Health White Paper. Mr Ellis said: ‘The public health White Paper is ambitious, but at the moment its probably the best show in town and we need to harness it and build on it and make sure that its delivered fairly and equally to all.’ Other drivers include the health inequalities action plan and related activity around benefit take-up and neighbourhood renewal. ‘All of these things are about public health, all of these things are about the wellbeing of citizens and we need to find a way to bring all the energy and action together. It feels that we’re only just beginning to scratch the surface’, stated Mr Ellis.  

Major policy strategies exist around public health, health inequalities and social inclusion. The challenge is translating these strategies into health improvements that are shared by the whole population. Mr Ellis urged patient and advocacy groups to make sure that the interests of their constituency groups are heard. He also outlined a wider role for the voluntary sector: ‘There are things that we can do and there are changes that we can make. There are things already happening and it’s our responsibility collectively to make sure that these things either continue to grow or, in places where it’s not already happening, at least get on the agenda.’  

Valuing differences – creating success together

Surinder Sharma, Director of Equality and Human Rights, Department of Health  

Responsibility for delivering the quality and human rights agenda at a national level across health and social care falls to Surinder Sharma. The Government wants the NHS to be responsive to the needs of different groups and individuals within society, and to challenge discrimination. Mr Sharma set out the role of the NHS as employer as catalyst for change. His objective is to ensure that the NHS is an open and inclusive employer, and invests in a workforce that has the skills and capacity to deliver the Government’s equality and human rights agenda.

 The NHS is the largest employer in Europe, employing 1.3 million people in the UK . In order to meet demand, it has imported nurses and dentists from places like the Philippines and Malawi . But there are increasing concerns about taking human resources from countries with their own needs. So attention has shifted to cultivating the NHS workforce in this country.

 It is a legislative requirement that the NHS reflects the diverse needs of the population. There are also sound business reasons for creating a workforce that reflects the needs of the population it seeks to serve. Over the next twenty years the UK black and minority ethnic (BME) population will double, and over the next ten years BME people will represent half the growth in the UK working population.

 The NHSA already has quite a diverse workforce:

But people from BME backgrounds are underrepresented at senior and managerial level, and the Commission for Racial Equality receives more cases of discrimination from the NHS than any other service in the UK .

In a competitive labour market the NHS needs to attract talent and develop people. As part of its Leadership and Race Equality Plan the NHS is investing in mentoring BME staff by senior leaders, setting personal objectives around race equality, and expanding training, development and career opportunities to develop more entry points for people from ethnic minorities to join the NHS. It is also undertaking systematic tracking of career progression within the service of staff from ethnic minorities and celebrating achievements in tackling race equality. Mr Sharma said: ‘What’s missing is a lack of coordination and cohesiveness around how equality and human rights are tackled across the NHS – it’s very piecemeal and driven by individuals.’

‘If employees are more contented and satisfied they are more likely to care better for patients’, claimed Mr Sharma. By understanding the local community better, the NHS is also better able to deliver care that meets their needs. The NHS is the largest buyer locally of services and has a role to play in making sure that these values permeate through to suppliers and that a better fit with the local economy is achieved. Mr Sharma concluded by saying: ‘The challenge that faces us now is how to translate the principles into practice with real outcomes.’

Delivery for all?

Stephen Martin, Deputy Director, Social Exclusion Unit

The Social Exclusion Unit (SEU) is a cross-governmental policy unit, based in the Office of the Deputy Prime Minister. Its role is to find solutions across Government to issues faced by socially excluded individuals and communities. Areas of previous work include neighbourhood generation, teenage pregnancy, rough sleepers and mental health.

Stephen Martin talked about a new project, Improving Services for Disadvantaged Adults, to examine how mainstream public services, like health, can better deliver for people who are disadvantaged. Mr Martin said: ‘The challenge we’re really trying to wrestle with here is how can we make public services more effective for those people who need services most but are more likely to miss out.’

The project is focusing on three groups:

People in these groups tend to be disadvantaged across a range of indicators and are less likely to benefit from public services than the general population. These groups are also growing or at growing risk in some way. In order to understand the challenges the SEU has consulted widely, including with voluntary organisations, the statutory sector, and service users in each group. Four key themes are emerging:

Information and communication. There are issues around the way public services like the NHS convey information, including readability, complexity of forms, the use of new technologies (like NHS Direct and the internet), and communicating with people with sensory impairment.

Staff awareness, skills and attitudes. There are issues around staff sensitivity to the kinds of difficulties that people from excluded groups face, including appreciation of hidden barriers (such as low literacy levels) and understanding the needs of specific communities. There are questions around whether the standard for good customer care should be service that works for those who have the most complex needs and are most disadvantaged. ‘If we’re getting it right for them we’re getting it right for everybody,’ said Mr Martin.

Service user competencies. For individuals to get the most out of public services it helps to have high expectations of services, a good understanding of rights and entitlements and communication skills and confidence to articulate those. The SEU is exploring activities to help people to develop these competencies.

Outreach and advocates. Community based organisations can help people access and benefit from public services, particularly people who have disengaged themselves because their experiences have been poor or their expectations are low. These organisations can serve as conduits of information and advice to people who are disinclined to access or trust official communications.

The SEU is still gathering evidence and is keen to collect views and data in relation to the three groups, including examples of good practice. Contact Mr Martin at Stephen.martin@odpm.gsi.gov.uk


Delivering the White Paper

Professor Sian Griffiths , Senior Adviser, Department of Health

Professor Sian Griffiths introduced the key elements of the White Paper Choosing Health. She said: ‘One of the reasons that it is very important that we keep public health on the agenda is we don’t lose the momentum that Choosing Health has helped to create’.

The context for the White Paper is growing health inequalities. For example, life expectancy has increased and infant mortality is lower. Yet the gap between social class V and social class I was 2.9 times greater in 1991 than it was in 1930. ‘So whatever we’re doing, what we’re not doing is addressing the causes of health inequalities. That’s really one of the biggest challenges that we have to face’, argued Professor Griffiths. There are also differences in life expectancy between genders, ethnic groups, the north versus the south of the UK , and even within cities like London between affluent and poorer districts.

‘Choosing Health is focused on trying to give equal life chances to all groups in society,’ explained Professor Griffiths. The priorities for action include:

 The White Paper advocates adopting a number of strategies to tackle these issues, including addressing some of the broader determinants of health, like housing, education, work environment and sanitation, as well as individual lifestyle. Some of the suggestions include:

Professor Griffiths finished by appealing to delegates to ask their local acute trust and primary care trusts how the Choosing Health targets apply to them.

Support from next door – new health trainers and the fully engaged society

Alistair McCapra, Head of Communications, Royal Society for the Promotion of Health

Alistair McCapra began by describing the Choosing Health White Paper as ‘a mixture of fairly open-ended new ideas, some more concrete proposals and a certain amount of recycling of things that were already there’. Its focus on individual lifestyles and what is known as ‘the fully engaged scenario’ has been considered controversial. Mr McCapra explained: ‘The Government is very keen to move the debate on from how well things get delivered to how well we look after ourselves and take care of our own health.’

It is against this backdrop that health trainers have been introduced. Mr McCapra said: ‘The health trainers are supposed to be frontline workers who go out and try to encourage people to live in a fully engaged way. They’re supposed to be expanding people’s health literacy and encouraging them as far as they can to take charge of their own health.’ The Government’s aim is that health trainers are community based and provide ‘support from next door, not advice from on high’. They will be accredited and available to everybody who wants help.

Further details have yet to be published. Mr McCapra argued: ‘We need to really take on where people are starting from. It might mean that the initial phases of work which health trainers do may actually have very little to do with health at all. This is very important in terms of what skills the health trainers might need to have’. He said that the emphasis should be on developing skills where they already exist – such as retired nurses, midwives, health visitors and others who have left the NHS. But he added that people with skills in dealing with debt or relationship problems, teachers, or benefit advisers could also play an important role. The Society believes that strong links with primary care trusts (PCTs) and having a health trainer in every walk-in centre will also be important.

Objections to the idea of health trainers include:

Mr McCapra identified three key reasons why health trainers might fail:

Workshops

 The aim of the afternoon workshop sessions was to produce a set of 'inclusion' plans.

Delegates were asked to identify practical steps that organisations could consider.

 Workshop A – Communication as a prerequisite to health for all

Gerda Loosemore-Reppen and Roger Hewitt (Sign) and Sarah Reed (Sense)

Sign’s mission is to improve the mental wellbeing of deaf people and help them to live independent lives. Sense strives for a world where the 23,000 deaf-blind children and adults in the UK can interact fully as active members of society and enjoy personal fulfillment. Both organisations emphasised that effective communication is essential for health.

Roger Hewitt reported on research in the North West , which found that more than half of British Sign Language users couldn’t ask doctors the questions they wanted to. One in 10 deaf people left the surgery without understanding what the doctor was saying, and four in 10 made a complaint, usually about communication. Sarah Reed told participants about a survey of hospital inpatients Sense carried out in 2001. According to this, 75 per cent of deaf-blind people felt staff did not understand their needs, 50 per cent weren’t told what food was put before them, the same proportion received letters they couldn’t understand, and only 2 per cent were provided with an interpreter in hospital.

Challenges:

1.    Staff awareness and sensitivity about the needs of deaf and deaf-blind people, including patronizing attitudes and assumptions that people with sensory impairments can’t make decisions about their own health.

2.     Availability and cost of highly skilled interpreters.

3.   Accessing general health information (patient information leaflets are often in 10 point print,
or  laden with jargon and difficult to understand).

      4.   Meeting the needs of people who have mental health problems or learning disabilities in
             addition to sensory impairments.

5.      Communicating with health professionals, including understanding medication regimes.

Solutions:

  1. Greater awareness of the needs of patients with sensory impairments – including staff training and using health trainers to promote these issues.
  2. Local contracts with interpreters and a system so that interpreters turn up with the people who need their services, as well as better clarity over who pays.
  3. Better patient information – patients should have to indicate their needs just once and then information should be passed around the service.
  4. Improved reception arrangements so that people know when it’s their appointment.
  5. Making better use of technology – such as text phones, pagers and portable loop systems. Latest developments include video phone interpreters and a DVD by Sign that GPs can use to help them communicate with deaf people.

Workshop B – Lessons from successful BME work

Sue Barber and Ian Flack (Council for Ethnic Minority Voluntary Sector Organisations, CEMVO)

CEMVO has received funding from the King’s Fund to set up the London Health Network. This is comprised of individuals and advocacy groups, as well as some strategic bodies like primary care trusts, with an interest in advocacy for black and minority ethnic (BME) groups. CEMVO maintains the database and runs bi-monthly gatherings, including training courses on specific areas of advocacy, information sharing events and networking sessions.

Sue Barber highlighted work CEMVO has done to link services to the views of stakeholders, particularly excluded groups (and within that BME groups), in relation to the Government’s choice initiative. The project has focused on developing a set of guidelines statutory services can use to work in partnership with the voluntary sector and use voluntary organisations as a conduit for reaching service users who are poorly served in terms of access to services. The guidelines recommend a stakeholder approach to identifying the needs of service users and designing services to meet these needs.

Challenges:

  1. Reaching minorities within minorities and people who don’t ‘fit’ their community (for example because of their sexuality or religion).
  2. Getting a genuinely representative voice.
  3. Short-term funding of projects.
  4. Selecting intermediaries who are acceptable to the groups trying to reach.
  5. Consultation fatigue.

 Solutions:

  1. Non-stigmatizing identification – ask everybody, don’t single people out so that they feel different by definition.
  2. Adequate funding for consultation – including reimbursing small organisations which lose staff resources for a day so that they can participate in consultations.
  3. Contacting people face to face (eg meeting people in shopping malls), but using electronic communications for people who favour these tools.
  4. Exit and entry interviews – when someone comes into the system ask what got them there; on their way out, ask them about their experience.
  5. Enlisting people from groups that trying to reach (for example gypsy travellers) to become health facilitators.

Workshop C – Ensuring a Surestart for all: integrating health and early years services

Lonica Vanclay (Department for Education and Skills)

Lonica Vanclay shared with the group the experience of Surestart’s 524 local programmes. Surestart takes an integrated and holistic approach to service provision. It encompasses a range of different services, including universal services (e.g. early learning and childcare for all) and services targeted at the 20 per cent most disadvantaged wards.

Ms Vanclay attributed the success of Surestart local programmes to a number of factors. These include people who have embraced the ethos – often there is a strong leader who has championed new ways of working within the locality. There has been a strong emphasis on consultation with local people and building on what already exists. Being able to focus on a small area and/or a particular group of people has also helped, and partnership with parents and children has been fundamental.

Children centres, neighbourhood nurseries and early excellence centres are designed to build on the ethos of local integrated service provision. The challenge is to take the lessons from the local programmes and apply them at a wider level where good partnerships are often harder to achieve.

 Challenges:

  1. Lack of information-sharing across organisations.
  2. Local authorities do not have a good track record of delivering responsive local services and engaging with excluded communities.
  3. Persuading organisations to work in ways that reach out to excluded families, including having evidence to demonstrate the benefits it can bring.
  4. Asking parents what services they want.
  5. Professional/territorial barriers.

Solutions:

  1. Setting targets can help local organisations to promote inclusion.
  2. Nurturing local relationships, networking and building strategic links.
  3. Strong leaders who can champion new ways of working and motivate others.
  4. Deciding indicators of success at the outset and encouraging acceptance of qualitative research.
  5. Good referrals, linkages and sign-posting.

Workshop D – Opening the door for disabled people: why access to health means more than tea, sympathy and ramps

Gerry Zarb (Disability Rights Commission)

The Disability Rights Commission has made addressing health inequalities a strategic priority for the next three years and plans to use its legal powers to conduct a formal investigation into health inequalities. Gerry Zarb set out some of the key challenges for disability equality and suggested some practical improvements. He began by setting the context in terms of health inequalities:

·         People with learning disabilities are 58 times more likely to die before the age of 50 than the rest of the population.

·         Uptake of breast screening for women with learning disabilities is only 17 per cent compared to 76 per cent for women as a whole. The figures for uptake of cervical screening are 3 per cent and 85 per cent respectively.

·         Disabled people are 10 times more likely not to be able to collect their prescription than the general population.

·         50 per cent of disabled people report feeling unfairly treated by healthcare services.

The Commission would like to see attention given specifically to targeting health inequalities related to disability. It believes there should be guarantees to independent living with national standards across the country, including rights to advocacy and communications support for people who need it. One initiative that should help is a new legal duty for all public sector bodies to promote disability equality from December 2006.

Challenges: 

1.    Attitudes: the view that the lives of disabled people are in some ways less valuable than the lives of others. It is a particular issue in relation to withholding and withdrawing medical treatment. 

2.    Lack of customer-focus: staff do not know how to make very simple adjustments, like enabling people to make appointments without having to use the telephone.

  1.   Non judgmental approach to health promotion and respect for patient lifestyle choices, which 
      may conflict with health promotion objectives.
  2. The impact of transport on the ability of people with disabilities to access services particularly
     in rural areas, but also urban centres.

5.      Access to screening and other health promotion activities by people with disabilities.

Solutions:

1.     Public service agreement targets to reducing health inequalities (coupled with monitoring) to concentrate the minds of staff.

2.    Enabling all disabled people to log their access requirements on the electronic patient record, so that they explain their needs just once (e.g. a longer consultation or information in Braille).

3.    Comprehensive disability and equality training for all NHS staff to address prejudices and raise awareness of disability issues.

4.    Giving disabled people a right to an independent advocate at critical points of the patient journey (e.g. when making treatment decisions).

5.      Annual health checks for groups at higher risk of health inequalities, particularly people with learning disabilities and long-term mental health conditions.