We were really pleased to hear a parliamentary debate in the House of Lords about the role of Healthwatch, and even more pleased when one peer, Baroness Masham, specifically mentioned Healthwatch Camden, she said:
“I want to tell noble Lords about a positive project. Independent Age, a voluntary organisation, has joined with Healthwatch Camden. Independent Age has developed a quality assessment for care homes based on the things that older people and their families want and need.
Because Healthwatch Camden has a statutory right to enter care homes on request, it has partnered with Independent Age as part of a pilot programme. This will increase the amount of information available to older people when making decisions about their care, as there is often not enough transparency over which care homes are good and which are not. It is good to hear of bodies working together. So much time and energy is wasted when organisations work in silos.”
Lord Harris, who called the debate, queried the resources available to local Healthwatch, and gave examples of local Healthwatch that were experiencing grant cuts if they spoke up about local authority services.
He said: “Local Healthwatch could be a tremendous force for good” but that their ability to fulfil that role has been hampered by lack of protected funding. Several peers cited a study by the Kings Fund, which reviewed progress in local Healthwatch and which identified a lack of clarity on what involving people in healthcare actually means.
Nothing about us without us?
The debate highlights the continuing challenge of making sure that the people who use health and social care services really are central to all decision making.
In the debate, Baroness Pitkeathley said that “the involvement of patients challenges orthodoxies, vested interests and established ways of doing things. If you share power with patients, which everyone says they want to do, it means that someone—the doctor, the nurse, the administrator—has to give up a bit of their power, and that is hard for them to do”.
Baroness Brinton made a strong case for the benefits of involvement, outlining how involving diabetic people in rethinking diabetes care is saving money as people are better able to care for themselves.
So by sharing a bit of power with their patients, diabetes specialists have been able to improve both individual outcomes and overall finances.
The Kings Fund report says: “Despite repeated policy commitments, various forms of duties to consult and involve, and a long history of different public involvement mechanisms and bodies, in practice the legitimacy and credibility of those providing that public voice often remains contested.”
This is true not only for organisations but also for individuals. I’ve been looking at a new report from the Care Quality Commission, “Learning, candour and accountability A review of the way NHS trusts review and investigate the deaths of patients in England.”
It looks at a difficult subject, and in particular what happens to the families when someone dies in NHS care. Too often, there has been “a defensive wall surrounding NHS investigations, an unwillingness to allow meaningful family involvement in the process” (Deborah Coles, INQUEST).”
In a foreword to the report, George Julian writes:
“When a loved one dies in care, knowing how and why they died is the very least a family should be able to expect. Yet throughout this review process we have heard from families who had to go to great lengths themselves to get answers to these questions, who were subjected to poor treatment from across the healthcare system, and who had their experiences denied and their motives questioned.”
This report shows the cost to individuals when professionals are not prepared to be challenged or to give up a bit of power. Defensive, secretive approaches by some NHS organisations results in a terrible experience for patients and their families.
Getting it right in Camden
In Healthwatch Camden, we don’t face being “stifled” in the way that Lord Harris described, we have a generally constructive relationship with commissioners and providers.
Like other local Healthwatch, we have had a drop in our grant, which makes it harder to do as much as we want. In some areas we also experience the lack of clarity on what involving people in health and social care actually means that was referred to in the Lords debate.
We hear a lot of reference to “coproduction” and we observe a lot of excellent consultation but not a lot of power sharing. Yet it really is important that people are involved, and have a loud, clear voice at all levels, because change is certainly on the way.
As I mentioned in our November blog Camden’s adult social care is under review. The proposals are now public, they were discussed at the Health and Adult Social Care Scrutiny Committee in December and a formal process of consultation will start early in 2017. We will add more information about the consultations in the New Year.
Healthwatch Camden has developed an Involvement Audit, to help assess how well providers are doing about involving people in their work. The audit is just one tool in promoting people’s rights to “nothing about us without us”.
As we plan for our work in 2017, we are committed to doing everything we can to make the slogan a reality in Camden.
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