ICS0010

Written evidence submitted by Norfolk and Suffolk Campaign to Save Mental Health Services

Who are we?

I, Mark Harrison, am the Chair of the Norfolk and Suffolk Campaign to Save Mental Health Services (the Campaign). The Campaign was formed by staff, service-users, and carers in 2013 following a ‘radical redesign’ of services at the Norfolk and Suffolk Foundation Trust (NSFT) which had decimated mental health services.

Since 2013, our membership has grown and we are one of the largest independent, grassroots mental health campaigning groups in the country. Sadly, a proportion of our membership now includes bereaved families whose loved ones have been lost to the failings in mental health.

You can find out more about the Campaign on our website www.norfolksuffolkcrisis.org

Why are we submitting?

We have a large membership and are in touch with many people who have lived experience of mental health services across Norfolk and Suffolk. Our campaign members include service-users, carers, bereaved relatives, people who are, or have been, NSFT staff, governors, carer representatives, or involved in training. Our membership also includes people who have been part of or involved in the development and boards of the Integrated Care Systems (ICS) in Norfolk and Suffolk.  We all want to support improvements. We could cite case studies to evidence all our claims if required.

Since our inception, there have been 8 CEOs and 3 Chairs of NSFT and mental health services in our region have been commissioned by Primary Care Partnerships, several Clinical Commissioning Groups, and the new Integrated Care Systems (Norfolk and Waveney and Suffolk and North East Essex). During that time 3 Ministers for Health have come from Norfolk or Suffolk. We are in a unique position to comment on the Integrated Care Systems because we were one of the early areas to develop ICS and we have seen the aforementioned, along with NHS monitoring and commissioning bodies, come and go with their different initiatives. All have failed to improve mental health services here. Our campaign believes that we hold the most accurate and detailed history of mental health services in our region and the impact the development of the Integrated Care Systems has had on improving failing services.

The two ICSs covering NSFT recognise the dire state of mental health services and have identified this as priorities for them.

“Improving mental health services and improving people’s wellbeing is one of the highest priorities for the new Integrated Care Board. We know that local services are not consistently good enough, and at the same time many more people need support…” [1].

From summer 2018, the then Clinical Commissioning Groups for East and West Suffolk embarked on a mental health and emotional wellbeing transformation project called A Very Different Conversation (AVDC). This was in response to the dire state of mental health services.  They described the need for change

“Despite the best intentions and hard work of many people, the system for mental health and emotional wellbeing in Suffolk is failing: despite millions of pounds spent, the outcomes for people are not yet good enough.”[2]

Feedback about NSFT services to the ADVC further emphasised the failings

In total, 385 individual experiences have been gathered from people using services, their carers, and professionals. 14% are positive, 12% are neutral or mixed and 74% are negative. This section outlines key themes identified within all of the feedback about NSFT services.[3]

We share a goal with the ICSs: for mental health services in Norfolk and Suffolk to be safe and effective. Whilst we welcome, in principle, the inception of integrated health services and their objectives, we have some concerns which would like the Parliamentary Committee to consider.

Background

In 2015, NSFT was the first mental health trust in the country to be placed in ‘special measures’. It has been rated as ‘inadequate’ by the CQC 4 times (most recently in April 2022). Nearly 8 years of successive failure has had a devastating impact on our communities. Over the years, countless bereaved relatives, concerned NSFT staff, or people who are desperate to keep their loved ones alive and well, have connected with the campaign. The levels of unmet need and distress seem to be increasing at an alarming rate.

We have lost faith in NSFT’s ability to provide safe and effective services, and in the wider system’s ability to call them to account. Therefore, in July 2022 we met with our region’s MPs, and the then Minister, Gillian Keegan, to ask them to intervene and to support us in calling for NSFT to be placed in ‘special administration’. Currently NSFT are under warning from the CQC that this is a possibility.

We believe that in excess of 2,500 ‘unexpected deaths’ have occurred since 2013 and that NSFT have lost oversight of how many people have died. It feels almost daily that we hear of another death. Since 2013, there have been 38 Prevention of Future Deaths (PFD) reports issued against NSFT by coroners. Therefore, we are calling for a statutory public inquiry to establish how many people have died and why – with a view to learning and change.

The failings of NSFT reflect the failings of commissioners and monitoring bodies. We believe the way services are commissioned has created gaps which has compounded the problems at NSFT. There significant gaps in services, for example for people with Autism. The crisis service is in crisis and an ongoing lack of beds means people are inappropriately placed out of area. Many people have effectively been abandoned by mental health services without commissioners providing the structures and resources that primary care and the 3rd sector need to keep people with mental illness safe and well. A prime example of this is the way the police are increasingly using their resources to meet unmet mental health need. The Norfolk Chief Constable said “The inability of the Trust [NSFT] to manage its demand effectively places additional pressure on the force, whose officers are often the first responders to people in mental health crisis”[4].

Our concerns about the Integrated Care Systems:

Recycling of personnel

Over the last decade, broadly the same group of people at senior levels have moved between the organisations responsible for commissioning and delivering the unsafe services at NSFT and partner agencies. They have moved from failure to failure and, as Kark and Russeli[5] say those who fail to lead safely and effectively simply move on to ‘kick the can down the road’. Some of those in high positions in the ICSs have been resistant to relinquishing their power, making the structural and commissioning changes required, or calling NSFT to account. There has been missed opportunity after missed opportunity to make things better. Therefore, we have no faith that things will be different this time. More of the same can only lead to higher levels of mental distress and death.

Board composition

We are concerned that ICS’s will not bring about the changes required because they will perpetuate the top down approaches and replicate in their boards structures those previously seen in CCGs. For example, we are concerned that the composition of both Integrated Care Boards do not have the right balance of people to meet the objectives of fully integrated system. Social inequalities are determinants of mental health, yet there is no one on the Board from housing and there is just a single representative from social care. There are no representatives from Children’s Services or education. The police, who clearly are involved in supporting people in mental health crisis are absent from the Boards and wider ICS structures. We welcome the Norfolk and Waveney ICS creating a ‘people and communities’ Board member but still feel the Board does not have enough people with lived experience on it. In Suffolk and North East Essex there is one representative of a service user organisation.  National organisations such as Mind are on the board, however, it is very difficult for them to challenge the system when they are commissioned by it.  It is deemed more important to have numerous Clinical Commissioning Group (now ICS) senior staff sitting on the ICS Boards rather than ensuring that service user and carers voices are central to discussions.  It remains a case of being “done to” rather than being “done with”.

Co-production

Both ICBs have stated commitments to co-production in their transforming mental health agendas. However, the CCGs that morphed into the ICS, have poor track records in co-producing mental health services. The Norfolk and Waveney CCG did not remunerate service-users and carers for participation which indicates they do not have a predisposed culture of valuing patient and public involvement. Suffolk CCGs paid service user and carer organisations to gather the views of service users, carers and members of the public as well as for their time working on A Very Different Conversation, however they failed to implement the co-produced plans which made AVDC tokenistic.

There are many 3rd sector agencies within Norfolk and Suffolk who interface with people who need support with their mental health who have the knowledge and willingness to lead on co-production. Yet, the CCGs (now the ICS) have spent hundreds of thousands commissioning external, profit-making organisations to report on what is needed for mental health services. Our campaign has noticed significant gaps in the reports commissioned under the transforming mental health agenda. Therefore, we think the transformation of mental health services is already undermined by a lack of engagement with service-users and carers.

The purpose of A Very Different Conversation was to co-produce the future of emotional wellbeing and mental health services as a whole system, include services users and carer organisations as equal partners.  This is highly relevant as it was intended to work in the way that the Integrated Care Systems should work and was viewed as the first project of the emerging ICS for Suffolk and North East Essex.  As the project developed it is an excellent example of the pitfalls and challenges that exist within the new ICS and the pitfalls of the political and regulatory influence that can de-rail a project with the very best of intentions.  It also serves to highlight the challenges within the ICS structure which demonstrate the impotence of a system which should be full of rigour and have the ability to drive forward change and improvements particularly where there are serious failures within an organisation. 

The AVDC project commissioned a Joint Strategic Needs Assessment which identified a number of key messages including:

• Emergency admissions for self-harm are significantly higher in Suffolk than England as a whole
• Young people have increasing levels of self-harm and suicide which should be addressed
• Existing mental health services do not clearly meet the needs of patients with personality disorders and the role of mental health services should be clarified[6]

In November 2018 Healthwatch Suffolk published a report reflecting the views of over 12,000 people as part of AVDC.  This clearly identified themes which were consistent with issues we see in Norfolk and with the issues our Campaign were saying needed to be addressed in relation to mental health services across both counties.[7]

Accountability

There has been a persistent lack of accountability which has resulted in a paralysis in moving the situation forward. Neither the CCGs or Local Authority Health Overview and Scrutiny Committees (HOSCs) seem willing or able to challenge NSFT. The coroners in our region regularly flag up dangerous practice but do not issue PFDs because the accept assurances from NSFT that things have already changed. Where PFDs are issued, there is no system for monitoring whether recommendations have been implemented. The failings in mental health services have been happening within plain sight of those responsible for commissioning them.

Services are often commissioned but not delivered and no one seems bothered. Significant amounts of money are wasted without NSFT or other agencies being called to account. For example, A ward at Hellesdon Hospital (Rollesby) was closed nearly two years ago. There was no strategic plan for its refurbishment and reopening. Nevertheless, 700k has been spent on the ward and plans were made to turn it into a single sex Psychiatric Intensive Care Unit without consultation with the HOSCs. To date the unit remains empty.

Imposed solutions

The CCGs did not show the capacity to challenge imposed ‘solutions’ (that have proved not to be solutions) from NHS England and the Department of Health. For example, a leadership team from ELFT were imposed in 2019 to urgently turn NSFT around. They created a false narrative of being “one of the fastest improving trusts in the country” and when they left, things were worse than they had ever been.

A contributory factor for the AVDC strategy not being implemented was NHSE, DHSC and Ministers for mental health preventing the ICS from doing so. The ICS were explicitly told they could only re-commission NSFT.  It is, therefore, pointless to say that the ‘power’ is in the local ICS systems as they are overruled by NHSE and the DHSC.

Additionally, NSFT rarely appears on the ICS risk registers, even following the publication of ‘inadequate’ CQC reports.  No system leaders/board members suggested it was necessary and, in Suffolk, it was the service-user and carer representative who requested this be placed as a risk.  However, there was no subsequent action taken or holding to account and it was, therefore, meaningless.

We are aware that the CCGs were blocked from taking the decisive action needed (such as breaking up NSFT which spans two large counties with very different needs) by NHS England. In our opinion, the ICS's are set up to fail in improving outcomes in population health and health care. We are not convinced that the ICSs, which are essentially made up of the same people, will have any appetite to make the challenges needed if mental health services are to improve.

In terms of the ICS objectives relating to mental health, our views are:

Improve outcomes in population health and health care – this will only be achievable if the balance of power and resources shifts significantly towards social care and the 3rd sector. Currently, the ICS look much as the health CCGs did. More of the same is likely to produce repeated failings.

Tackle inequalities in outcomes, experience, and access – The ICS needs a radical shift in thinking from the polarised health versus social care provision. We believe that only a genuinely co-produced strategy is likely to be able to achieve this. We have seen to many examples, such as the REST service in our area, where a top down approach has ticked boxes for accessibility, only to prove to be a reductive service that the people it is designed to support find inaccessible. Without the inclusion in ICSs of agencies who can alleviate people’s stress factors (such as housing or benefits), then there is likely to be insufficient understanding and addressing of social determinants of mental health.

Enhance productivity and value for money – We could cite numerous examples of how vast sums of money have been wasted by commissioners and NSFT on ill-thought through or vanity projects. Meanwhile 3rd sector organisations who provide effective support for people’s mental health are starved of resources. In recent years there has been an exponential rise in managers and senior leaders across mental health commissioning and service delivery. We are not convinced the ICSs are willing to redistribute this money into frontline services.

Help NHS broader social and economic development – All the partners across the NHS and beyond are impacted by inadequate mental health services. We regularly hear of people in mental health crisis held in A and E departments for days (sometimes weeks) waiting for beds, Primary care are left holding people waiting for assessment and treatment or those unable to access a specialist service, acute hospitals have people waiting for discharge who do not have the necessary community mental health services, schools are trying to support children and young people who are on seemingly endless waiting lists, and the police spend a disproportionate amount of time dealing with people in mental health crisis. We are not convinced that ICS partners have been given sufficient resources to maximise their potential to support the wider NHS and partner agencies.

In summary, we welcome the concept of integrated care systems and partnership approaches but we remain unconvinced that the ICSs have been structured in way that can achieve their goals with regard to mental health. We would like to see co-produced strategies with ICSs having a minimum of 50% members with lived experience who are remunerated for their time and wisdom. We feel that unless there is a culture/power shift within NHS England and the Department of Health the potential for ICSs to respond to the unique needs of their localities and to challenge/change poor practice in mental health services is compromised.

We remain unconvinced that ICSs are different enough from previous health boards for any appreciable difference to be made. In Norfolk and Suffolk continuing to deliver mental health services in the same way, with the same people leading them, will inevitably result in continued predictable and preventable deaths. Our campaign wants to see root and branch change because continuing as things are is unconscionable. Our question is: What will really be different?

We hope you will consider our evidence. We can provide details if required. We would welcome the opportunity for campaign representatives to give evidence in person.

October 2022