Advocacy Partners Speaking Up
Strengthening Voice, Championing Rights, Changing Lives
Advocacy Partners Speaking Up’s response to Equity and Excellence: Liberating the NHS and associated consultation papers
About Advocacy Partners Speaking Up
Advocacy Partners Speaking Up is a pan-disability organisation, shaped by its constituents, providing all forms of advocacy including non-instructed advocacy, involvement, skills & self direction services. The latter includes personalised support planning & brokerage.
Advocacy Partners Speaking Up supports people who face disadvantage or multiple inequality to have a voice and real control over their lives. We have pioneered new ways of enabling people to be heard, have rights and shape services, ranging from the creation of local Parliaments run by people with learning disabilities, self advocacy and peer support groups, to new statutory services supporting people with the highest support needs facing the most critical decisions. Our Consultancy and Training is led by a team of people with learning disabilities. This programme is also responsible for creating our accessible publications and resources, such as the personal budget game “My Life, My Budget”. We have developed award winning programmes over the last 30 years and as a result have become one of the largest advocacy providers in the UK, working with 34 local authorities and supporting over 10,000 people per annum.
Advocacy Partners Speaking Up welcomes the opportunity to respond to the overarching vision of the White paper, Equity and Excellence: Liberating the NHS. Our response is based on our extensive experience of working with disabled and older people and the feedback we have received from advocates, services users and our key stakeholders. We have not provided a response to every question in the consultation documents but have focused on those areas that are particularly pertinent to advocacy and involvement.
“Nothing about us, without us”
Advocacy Partners Speaking Up welcomes the White Paper’s focus on securing good outcomes for people, on the need for more, better quality personalised services, on strengthening patient voice and the crucial role that more accessible information, choice and control can play in achieving these objectives.
Our experience of working with disabled and older people around support planning and personal budgets has shown that even the most vulnerable can develop imaginative solutions to their care needs. The reforming power of their choices to transform services is only possible through the availability of advocacy service. Without such advocacy a number of service areas will not be subject to the same pressures for improvement, or be encouraged to innovate to the same extent as those serving people with greater capacity to exercise voice and choice.
Many of the aspirations and principles of the paper echo the fundamental ethos of advocacy; that people are the experts on their conditions, circumstances and needs, that people should have a choice on the fundamental nature of care and support, that services should be designed around the person and not vice versa, that discrimination is unacceptable, and that substandard treatment will be identified and is not tolerated.
We welcome the White Paper’s commitment to the principle of “Nothing about us, without us” and the recognition that in some cases the NHS is poor at being responsive to the patients it serves – a statement that reflects both the need for and the reason why many people seek independent advocacy providers. Individuals, particularly those with longstanding or complex conditions that can give rise to stigma, often feel the need to be supported to challenge health and social care professionals to get the care and outcomes they seek as people, not just patients, so that they can have more control over their lives. Methods of delivery of many services have been inappropriate to the needs of individuals wishing to access them. A focus on only one aspect of a person’s life has often led to services which ignore the rest of their needs. These are all instances of people being excluded from access to high quality healthcare which is appropriate to them.
In times of budgetary cuts it is likely that those less able to challenge will suffer disproportionately in access to care and in the commissioning and design of services unless there is independent advocacy provision to enable their voices to be heard.
Local democratic legitimacy in health
APSU welcomes the White Paper’s proposals to increase people’s involvement in decisions about their health and care together with the creation and engagement in decision-making of local HealthWatch organisations.
APSU believes it is vital that local HealthWatch organisations do not merely represent the same special interest groups that currently sometimes populate LINks organisations – there must be strenuous efforts to ensure that these bodies genuinely represent their communities, including those groups who are currently often overlooked and who may suffer from health inequalities.
Enabling voice, choice and control is a recognised strategy for overcoming inequality. However APSU’s experience is that effective user engagement and participation takes time and investment to develop. We have found that user engagement works most effectively if there is a strong commitment among professionals to bringing about real change on the basis of what users say. “Nothing about us without us” is an important commitment but putting it into practice will require a shift in power from professionals to people who use services, which in turn will require a significant change in the culture of professionals and organisations.
Giving individuals and groups of people with support needs greater responsibility for their healthcare and the opportunity to improve local health systems is a welcome and significant step. In order for it to be successful proper support, information and advice will need to be in place. However, communication of information, even when it is made easier to understand, can still be too difficult for many to access unless they have the right advocacy support. Independent advocacy is therefore essential if their voice is going to be heard and choice and control exercised.
Q1: Should local HealthWatch have a formal role in seeking patients views on whether local providers and commissioners of NHS services are taking account of the NHS Constitution?
Yes, local HealthWatch should be a membership body (individuals and organisations) whose role is primarily about engagement, involvement, listening and communicating views as well as being eyes and ears about quality of services and users experiences. There is scope for developing relationships between local HealthWatch and patient participation groups which GP practices should be required to support as a condition of being part of a commissioning group. Local HealthWatch must ensure that local commissioners and providers of NHS services are taking the NHS constitution into account. Local HealthWatch must also be required to seek the views and experiences of a broad range of patient communities and to harness the expertise of independent advocacy providers to do so – if this does not happen, those who are traditionally marginalised will remain so.
Q2: Should local HealthWatch take on the wider role outlined in paragraph 17, with responsibility for complaints advocacy and supporting individuals to exercise choice and control
APSU does not believe that local HealthWatch should take on the responsibility for complaints advocacy. This would, in our view, distort its activity and hinder it as an effective enablerof local voices. Complaints advocacy is a specialist service and is best commissioned from specialist providers which can offer a service over larger geographical areas and deliver value for money cost efficiencies that would be beyond the Local HealthWatch remit. The current ICAS service has not been properly evaluated and it should be before any changes are made so lessons can be learned.
HealthWatch England could commission complaints advocacy services (ICAS or a successor), but it should NOT become a provider of complaints advocacy. Many Community Health Councils found themselves doing little else but handling complaints which absorbed staff time and often put them into confrontation with hospital providers (they had no primary or social care remit).
APSU recommends that Local Authorities should commission independent advocacy providers, NOT HealthWatch, to support those individuals who lack the means or capacity to engage and participate, but who wish to do so, and to enable them to make informed choices. It should be noted that such advocacy which assists people to have their voice heard, access & understand information, aid navigation of services and enable choice is of a very different nature and character to complaints advocacy. It has much greater potential to enable people to look beyond the scope of existing service provision, to improve the commissioning of services and outcomes for individuals.
Our experience is that supporting patients to submit and pursue complaints can sit with the role of an independent advocate. Independent advocates offer huge skill in helping people to formulate their concerns and present them to a range of different professionals building a constructive dialogue that involves and listens to service users and brings about change that enables improved outcomes in their lives. Independent advocacy can be involved too at earlier stages of the commissioning process, reducing the causes of complaints, fostering a culture of public participation and patient voice, service innovation and collaborative working.
However, our concern is that the two advocacy functions do not necessarily sit well within the same service. To combine them in one service runs the risk of compromising precisely the independence that patients require if they are to pursue a complaint; threatens to overwhelm the capacity of the service as complaints represent a huge volume of work; and they eliminate the scope for cost-efficiencies that could be gained by managing an effective complaints service on a more regional basis.
APSU believes that Local Authorities should have primary responsibility for commissioning advocacy, from statutory to more generic advocacy, for a number of reasons:
· Local Authorities currently have greater experience in commissioning advocacy
· In our discussions with local LINks they have reported a lack of confidence and expertise to commission advocacy effectively. They do not wish to take on this responsibility.
· National HealthWatch would lack local knowledge and our current experience suggests a potential risk of over-commissioning (eg with regard to IMCAs) and under commissioning of generic advocacy due to insufficient understanding of local needs.
· If Local Authorities and HealthWatch are separately responsible for commissioning different forms/models of advocacy there is a real danger that some of the most vulnerable people will slip through the net. While there may be overlaps in commissioning, it is more likely that one body will assume the other has responsibility.
· As Local Authorities retain safeguarding responsibility, it is appropriate that they should commission the advocacy that supports this function.
Q3 What needs to be done to enable local authorities to be the most effective
commissioners of local HealthWatch?
A national template contract setting out clear outputs, outcomes and lines of accountability. It is essential that Local HealthWatch is more consistently delivered across the country than previous incarnations such as PPIs and LINkS have been.
LINks are statutory bodies and this should also be the case for local HealthWatch. They should be accountable to their local authorities for their performance against national standards and compliance with a national contract. We would suggest that a number of steps could be taken to generate further value:
· a standard website model (with capacity for local branding) to foster familiarity, consistency and accessibility) such as some LINks have already pioneered;
· a standard database developed through HealthWatch England for local HealthWatches to use for all their case work and monitoring
Q4 What more, if anything, could and should the Department do to free up the use of flexibilities to support integrated working?
For the statutory service, Section 75 of the National Health Service Act 2006 (formerly Section 31 of the Health Act 1999) provides a legislative framework to enable health bodies and local authorities providing health related services to pool money, and integrate resource and management structures. These arrangements allow for the joining up of commissioning for existing or new services and similarly for the development of provider arrangements. The White Paper ‘Our Health, Our Care, Our Say’, also highlights the use of Section 75 Agreements as a way of improving partnerships and improving services. ‘Virtual’ trusts such as children’s services are also a possibility. However both these examples need promoting as possible ways forward together with much clearer explanation.
From the users perspective, it must be made clear at every opportunity that local healthwatch’s remit is to work across all health and social care, whether provided by NHS bodies, or non NHS ones commissioned to provide NHS services.
Q5 What further freedoms and flexibilities would support and incentivise integrated working
The perceived barrier of pension arrangements of public sector workers is one of the biggest blocks to incentivising the creation of mutuals and other employee ownership approaches to delivering services.
Q6 Should the responsibility for local authorities to support joint working
on health and wellbeing be underpinned by statutory powers?
Yes
Q7 Do you agree with the proposal to create a statutory health and
wellbeing board or should it be left to local authorities to decide how to
take forward joint working arrangements?
Yes - It must be a statutory duty to create a health and wellbeing board
Q8 Do you agree that the proposed health and wellbeing board should have
the main functions described in paragraph 30?
Yes
Q9 Is there a need for further support to the proposed health and wellbeing
boards in carrying out aspects of these functions, for example
information on best practice in undertaking joint strategic needs
assessments?
Yes, the health and wellbeing boards will need to be well supported with local authority analytical and administrative support.
Experienced independent advocates, working within HealthWatch, Patient Participation groups or in other community or group settings, have the skills to access and represent the voices and experiences of previously excluded groups of people. Their expertise and input, as well as their understanding of safeguarding, would be a valuable addition and asset to a health and wellbeing board, and could contribute to addressing long standing inequalities in future commissioning arrangements and more equal access to and take-up of healthcare. The Equalities Impact Assessment notes “Addressing these inequalities will lead to greater efficiencies in the healthcare system as well as promoting and supporting a fairer society”. Simply put, people are more likely to access services that reflect their need, more likely to stick to plans that they have been involved in designing and such plans are more likely to work.