Brent Patient Voice: the story so far

At Brent Patient Voice’s first AGM on 19th April 2016 Interim Chair Robin Sharp CB presented an overview of the Group’s activities since it was founded in November 2014. This is his annual report to members:

“Some members of the disbanded Equality, Diversity and Engagement (EDEN) Committee of the Brent Clinical Commissioning Group (CCG), including some Chairs of the Locality Patient Participation Groups (PPGs) and others with long experience of health and social care issues, came together in November 2014 to found Brent Patient Voice (BPV).

 

The intention was to be an independent not-for-profit voluntary body to express views to those who plan and provide health and social care in Brent and to be involved in such planning if invited.

 

We agreed a constitution, subscribed some starter funds, wrote a prospectus and called a public meeting in February 2015, when Dr Michelle Drage, Chief Executive of the London-wide Local Medical Committees, gave us her vision of a holistic approach to general practice. 80 to 90 people attended the meeting and around 50 joined BPV. Membership now stands at over 70, the vast majority being individual patients in Brent, plus a handful of organisations.

 

We said at the outset that we would perforce have to work mainly via the internet and email, since we did not have the money or any back up staff to organise face to face meetings. That is how it has been. It has advantages because it is quick and cheap. It has the disadvantage of lacking direct feedback. We acknowledged with gratitude donations recently received from the former Healthwatch Brent CIC and an individual – see our accounts.

 

A great stroke of good fortune was that at our launch event we recruited an internet genius who quickly gave us an impressive website and associated means of communication. We have used the website to report our activities and our views, as well as to register new members. There is much more we could do with it if we had the know-how. To date comments on stories from non-members have been sparse, though at least we can say that it is easy for anyone who does want to give their views.

 

The Steering Group has had 21 meetings altogether, but now we meet monthly. We are hugely grateful to Phil Sealy and the Learie Constantine Centre for hosting our meetings without charge. In between meetings we have exchanged several thousand emails. We usually agree readily about ends but seldom about precise means, so a rather large quantity of mental energy is consumed before we agree actions. We have probably sent a few hundred messages to the powers that be, along with upwards of 30 Freedom of Information requests. There is never a dull moment, though plenty of disappointments and a few successes.

 

Members of the Steering Group at our launch were Nan Tewari, Irwin Van Colle, Peter Latham, Lola Osikoya, Iram Yaqub, Maurice Hoffman, Phil Sealy and Robin Sharp. Since then, Iram stepped down and we were joined by David Cooke and Ruth Bradshaw. Gaynor Lloyd frequently attends, while Cllr Keith Perrin is part of our communications network. I pay tribute to the liveliness and commitment of Steering Group members, though I probably have a few more grey hairs as a result.

 

How do we operate? Our focus is the Brent CCG and its activities, though we also follow the work of the acute hospital trusts, the GPs and the networks of GPs that serve patients in Brent. We attend all meetings open to the public and take the opportunity to submit questions for sessions where these are invited, e.g. in the half hour slot before CCG Governing Body meetings. To do this effectively we try to read around 200 pages of papers for the meetings in the space of the 2-3 working days for which they are available. We also follow national press articles and NHS England policy papers, newsletters and A&E statistics which have implications for local services. We then take up the issues with the authorities concerned and publish the results in digested form on our website.

 

Without going into detail, some of the main BPV outputs since February 2015 include:

 

  • 5 BPV members gave oral evidence to the Mansfield Commission on Shaping a Healthier Future at Brent Civic Centre on 9th May 2015;
  • While welcoming the abandonment of the MSK and Gynaecology community clinic procurement exercises in March 2015 we made constructive suggestions for a roundtable approach to finding a way forward;
  • Later we found out that the abandoned exercise had cost over £700,000;
  • We discovered via personal experience that the new Community Cardiology Clinics commissioned by the CCG from the Royal Free London Healthcare Trust were subjecting patients to long delays – see separate posts for an account of subsequent BPV work as patient representative on the contract review group: the outcome was positive, up to a point;
  • Post the Mansfield hearings we sought and were given a substantive meeting with Rob Larkman and colleagues in the leadership of Shaping a Healthier Future – but concluded afterwards that we had been told virtually nothing, though perhaps we helped to get the project website improved;
  • We made a 20-page contribution commenting on the CCG’s Commissioning Intentions plan for 2016/2017 and were among the handful of folk to attend follow-up meetings, but we remain in the dark as to whether this or other patient inputs had any impact on final plans;
  • Last October we wrote three times to the communications team and clinical leadership of the CCG asking them to modify advertisements saying that “A&E is for life-threatening emergencies only”. When the CCG refused to act BPV referred the campaign to the Advertising Standards Authority, who after a careful process upheld the BPV complaint and effectively banned the ads;
  • When the Mansfield Report was finally published in December 2015 we made recommendations to the Brent CCG and Brent Council about follow-up ideas but these drew no response; we regret to say that the NHS has made no substantive reply to the Report;
  • Early in 2016 we took up with the LNW and Imperial Healthcare Trusts the likely consequences of an unpublished letter from Monitor to all trusts requiring the reduction or elimination of deficits by means of staff reductions; we received detailed responses from the Trusts (including a tribute to our work from LNWHT) but Monitor (now called NHS Improvement!) have refused to disclose sensitive details from their letter;
  • We have continuously monitored A&E performance at the two Trusts, partly via FOI requests, and remain concerned at long waits, now even for less serious emergency cases;
  • We have pressed the CCG to have a public meeting on local implementation of the NHS England plans to “transform” primary care by 2018, involving large federations of GP practices with patient lists of over 100,000; we are now calling for Brent Council’s Scrutiny Committee to investigate;
  • Linked with this threat, but not the same thing, are the “Sustainability & Transformation Plans” which conglomerates of CCGs, hospital trusts, GPs and local authorities are required by NHS England Chief, Simon Stevens, to write over the next few weeks: we are watching this process carefully, while recalling that “sustainability” means “cuts” and “transformation” means “using less medically qualified staff”;
  • We remain vigilant about the implementation of the Whole Systems Integrated Care project by the CCG; while we are very keen on integrated care centred round GPs, we are concerned about data warehouses, systems for capitated budgets and informed consent by vulnerable patients and their carers;
  • We regularly draw attention to conflicts of interest which arise from a CCG Governing Body with a majority of GPs awarding contracts to networks of local GPs, noting that this is a national problem under the Health and Social Care Act 2012 to which there is no easy solution;
  • We welcomed the new Healthwatch Brent and had several meetings about collaboration: Lola Osikoya from our Steering Group has joined their Advisory Board and keeps us in touch;
  • We applied to be co-opted to membership of the CCG/Brent Council Health & Wellbeing Board but, after a long wait, had our application rejected.

 

Members will appreciate that it is not easy to report this type of verbal wrestling in a simple or dramatic way. We won’t disguise the fact that we often ask ourselves if it is a worthwhile way to spend our time when we could be walking in the countryside or visiting art galleries. We comfort ourselves by remembering that we are trying to speak up for patients who can so easily get forgotten in the weird and wonderful world of NHS jargon and financial incentives.

 

We are sorry to report that we have not achieved effective BPV links with practice PPGs, though we belong to our own where they exist. In addition only two of the previous locality PPGs are meeting regularly, now that the CCG has withdrawn logistical support. Sadly we have not been able to discern any significant new initiatives by the CCG to improve the involvement of patients and public in planning and delivering health services as promised in the wake of the Coulter Report which was used as the basis for getting rid of EDEN. While there is still plenty of dialogue, replies are taking longer and the flavour is more impersonal than before.

 

The future of patient engagement in Brent looks uncertain but our conviction that it is vital to improving the design and delivery of services remains unshaken. We hope and believe that we have been able to contribute in our small way. We would like to know what our members think.

 

Robin Sharp CB

Interim Chair 2014-2016                                                               15th April 2016

 

 

 

 

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