The NHS Future Forum has completed a new phase of consultation, gaining further feedback from patients, service users and professionals on four themes relating to the proposed reform of UK health services (information, integration, education and the role of the NHS in public health).
This page looks at the report on information, and considers the implications its findings and recommendations may have on black and minority ethnic communities.
The full report is available from the Department of Health website.
Key implications for black and minority ethnic communities
- Integration is a vitally important aspect of the health and social care experience and is of greatest relevance for the most vulnerable and those with the most complex and long‐term needs
Feedback received from consultations on the White Paper and as part of the Future Forum also stressed this need for integration. In particular, respondents emphasised the relationship between physical and mental health, with the potential for distress resulting from long-term conditions, such as chronic heart disease or diabetes. Furthermore, for some vulnerable groups, such as Gypsy-Travellers (external website), there may be a need to support patients through their care pathway and emphasise that treatment is ongoing process.
- Health and social care service users, carers and community groups are a key asset to be embraced, rather than a burden to be endured
We welcome the Future Forum’s emphasis on ‘no decision about me, without me’. Working with patients, carers and community groups can help that care is culturally competent, and properly takes into account factors such as faith, dietary or hygiene practices, rather than seeing these as ‘extras’.
- Every patient with long‐term or complex needs should have access to a named coordinator for all of their care, taking into account their personal preferences
Black and minority ethnic communities may be more likely to experience difficulties negotiating complex care pathways, due to personal preferences based on cultural or religious factors. Furthermore, if language is an issue, repetition of information about conditions and treatment creates the risk of errors in communication, especially when inconsistent provision of translators is taken into account. Named coordinators could ease this process. However, this is a two-part process, and coordinators must be supported to facilitate a change in culture which prioritises involving and understanding patient needs. Our work on the Equality Delivery System and the Equality Champions programme has sought to provide tools and models to help NHS and other provider organisations to understand how to engage with patients and the wider community.
- Patients’ experiences across whole journeys of care, and within and between services, should be evaluated
We took part in the Department of Health’s recent consultation (external website) on the collection of patient experience data for black and minority ethnic communities. The consultation not only emphasised the importance of collecting relevant data, but also of the need for black and minority ethnic communities to participate in data collection/survey design, taking into consideration issues such as language or cultural factors. Community groups should also be supported to effectively analyse data and make it practical and useful.
In the past, surveys of black and minority ethnic patients have shown consistently poorer health and social care experiences. Therefore, as has been stated elsewhere in the Future Forum reports, the evaluation process must not only plan for the collection of data, but should also consider how this information will be practically applied.
- The justice system needs to link in better with traditional care and health services
Consultation with regional partners in Liverpool has suggested that in some areas there is a lack of integration in care with youth offenders and mental health services, and therefore this recommendation is welcomed. However, our briefing, African and Caribbean men and mental health (external website), suggests that African-Caribbean men in particular are both more likely come to the attention of mental health services via the police and criminal justice system, and to receive the harsher end of services, such as seclusion, control and constraint. This suggests a need for preventative outreach to ensure that individuals come into contact with health services earlier, and engagement with the criminal justice system is limited.
- The dependencies between health, social care, housing and other services should be recognised to prevent, delay, reduce or divert demand on more costly health and social care services
The “wider determinants of health” have become a key issue for the Department of Health since the Marmot Report, and as DH Strategic Partners we have emphasised the link between health and ‘real life’ experiences such as socio-economic factors, poor housing and experiences of racism. Our Better Health (external website) and Better Housing (external website) briefing papers have sought to emphasise this link, in particular, our papers Long-term ill health, poverty and ethnicity (external website); Rural minority ethnic experiences: housing and health (external website) and our up and coming briefing paper on black and minority ethnic communities and supported housing (external website).
- People and communities should be key partners in designing services
This principle has been central to our work as DH Strategic Partners, recognising that carers, patients and non‐professionals can become a greater part of the solution and that by bridging the gap between community and statutory services at local and national level their contribution and input can be recognised. In particular, our briefing on carers from black and minority ethnic communities (external website) recognises the contribution made by non-professionals, whilst at the same, acknowledging their support needs.
- Patients should be helped to understand what care and support they are eligible for and how they might pay for it if they are not eligible for state‐funding
This issue may be of particular relevance for refugees and asylum seekers, with on-going confusion amongst some health professionals of the rights to healthcare amongst different migrant groups. This is described in our Better Health briefing, Health and access to health care of migrants in the UK (external website).
- We need to empower patients and families to fill in their own gaps in services, and support them to do so
Our work with the black and minority ethnic voluntary sector consistently highlights good practice at the regional and local level (for example, Better Health briefing 22 (external website) highlights the success of a smoking cessation project targeting the Bangladeshi community in Tower Hamlets), as well as greater engagement with communities or individuals who might be regarded as ‘hard to reach’ by more mainstream services. However, whilst we praise the principle of involving and engaging community ventures, we would not want to see this as gaining ‘something for nothing’, and would seek to highlight the large number of smaller organisations who are struggling to maintain service in light of funding cuts.
- Shared decision‐making, self‐care and control should be at the forefront of commissioners’ minds, and they should contract for and measure providers’ ability to deliver this. Such information must be available in a range of languages and formats, and not solely written in English
This need to provide information in a range of formats and languages was obviously central to our recent In your own words translation and interpretation conference. However, delegates also emphasised that involving patients in shared decision-making requires that not only is information provided in different languages, but that information is understood by patients regardless of language. Face-to-face support may also be be important, particularly if care pathways are complex (see, for example, Effective communication with service users (external website) and User participation in health care services (external website))
- Move away from traditional “decide first, ask later” approaches to commissioning and ensure that patients and carers, as well as the wider community, are involved as partners throughout the commissioning process
This was a key theme at In your own words, with calls for quality assurance processes to ensure that if providers claim to engage with the public, this is done as an intrinsic part of the commissioning process, rather than as an afterthought.
- Using a population health approach will help include socially excluded groups, such as Gypsy-Travellers or the homeless, in the commissioning process, which in turn limits the likelihood of them ‘falling through the gaps’ or receiving fragmented care
We welcome these recommendations, and also the recognition that without engagement, groups such as Gypsy-Travellers or new migrants may experience poorer health than the general population (see Better Health briefing 12 (external website) and Better Health briefing 19 (external website) respectively).
- Health and wellbeing boards should become the strategic decision‐making body for all local health and wellbeing services, including how health, social care and public health budgets are spent for the benefit of the community and the system as a whole
We welcome this emphasis on local priorities, but emphasise that ‘the community’ must be seen to include minority or vulnerable groups, and must not just take into account society’s most vocal.
- Personal budgets are often used to create highly personalised packages, exactly tailored to an individual’s circumstances
We recognise the role that personal budgets can play in tailoring services to the needs and priorities of patients, for example, to the linguistic or cultural preferences of black and minority ethnic patients. We also recognise the potential for creativity that personal budgets allow. When participating at a recent policy roundtable run by NCIL, we were alerted to projects that pooled budgets to spend on ‘group-identified need’, for example a group personal assistant, or a regular trips away together.