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Using urgent and emergency services at times of mental health crisis Views and experiences of using urgent and emergency health care services in Norfolk during times of mental health crisis: an independent report for the NHS England East Anglian Urgent and Emergency Care Network Please contact Healthwatch Norfolk if you require an easy read; large print or a translated copy of this report. Healthwatch Norfolk, Suite 6 – Elm Farm, Norwich Common, Norfolk, NR18 0SW Email address: [email protected] Telephone: 0808 168 9669 May 2017 Contents Who we are and what we do 3 Acknowledgements 3 Summary 5-7 1. Why we did this work 8 1.1 Background to this work 8 1.2 Focus 8 1.3 Rationale for choosing mental health crisis use 8 1.4 Aims 10 1.5 Population of interest 10 1.6 What was out of scope? 10 2. Approach 11 2.1 Our principles 11 2.2 Governance arrangements 11 2.3 Project team 11 2.4 Methods 12 2.5 Delivery 12 2.6 Analysis 13 3. What we found out 14 3.1 Section contents 14 3A. Desk research 15 3B. Stakeholder and public engagement 22 3C. Results of a service user and carer questionnaire 35 3D. Audit of the Norwich & Central Norfolk Mind Mental Health Support Line 59 3E. Recent Experiences of Mental Health Crisis Services in West Norfolk 65 3F. Experiences of veterans accessing mental health crisis support 81 3G. Dementia mental health crises and emergency care in Norfolk 88 3H. John Room House, Thetford: A customer’s perspective of mental health 108 3I. A mental health snapshot created by ‘Experts by Experience’ 114 3J. Experiences of service users and carers in Great Yarmouth & Waveney 120 3K. Mental health provision for asylum seekers and refugees in Norwich 128 3L. A validation workshop on mental health crisis themes 131 4. Summary 133 4.1 Use of urgent and emergency services 134 4.2 When services work well 135 4.3 How can services be improved? 136 4.4 Next steps 139 2 Who we are and what we do Healthwatch Norfolk is the local consumer champion for health and social care in the county. Formed in April 2013, as a result of the Health and Social Care Act, we are an independent organisation with statutory powers. The people who make decisions about health and social care in Norfolk have to listen to you through us. We have five main objectives: 1. Gather your views and experiences (good and bad) 2. Pay particular attention to under-represented groups 3. Show how we contribute to making services better 4. Contribute to better signposting of services 5. Work with national organisations to help create better services We are here to help you influence the way that health and social care services are planned and delivered in Norfolk. Acknowledgements We are extremely grateful to the people and organisations who gave their time to us. In particular, we wish to acknowledge the following people and organisations who, in carrying out a range of activities, have made a significant contribution to this work: Dr Ben Marshall and staff of Norwich & Central Norfolk MIND Zena Aldridge, Dementia Nurse Specialist Kevin Vaughan, Feedback Health Michael Emeney, Donald Lane and the ‘Experts by Experience’ at City Reach Services Dr Deborah Holman and staff of West Norfolk MIND Luke Woodley and the team at The Walnut Tree Project Declan Geraghty and staff at Access Community Trust Ben Margolis at The Grange and Amelie Sells at New Routes Debbie Roberts, Graphic Facilitator at Engage Visually We would also like to thank the local Healthwatches who helped us with queries about models of mental health crisis care and crisis smartphone Apps: Healthwatch Cambridgeshire Healthwatch Surrey Healthwatch Devon Healthwatch Cornwall The East of England Urgent and Emergency Care Network is grateful to Healthwatch Norfolk for the production of this excellent report [July 2017] 3 4 Summary Healthwatch Norfolk has done some work for the NHS England East of England Urgent and Emergency Care Network. The work started in December 2016 and finished in May 2017. The aim was to gather together the experiences patients and families of mental health crises care along with the local wisdom of care providers. The focus was to seek out where services are working well and what needs to be improved, so this learning could be shared with others. We had help from a number of community and voluntary organisations, who offered different kinds of support to mental health service users and carers. We asked people to tell us about their views and experiences of using urgent and emergency services at times of mental health crisis. At least 686 mental health service users and carers shared their stories through: 199 survey responses from mental health service users and carers An audit of 10,942 calls to a mental health crisis helpline by 498 callers Face to face, one to one and paired interviews with 50 mental health service users and carers Informal discussion groups comprised of 21 service users and carers 33 case stories One to one interviews with 18 stakeholders (executives, senior managers, commissioners, service providers, clinicians and practitioners) The stories came from adults from all walks of life, including for example; veterans, refugees, asylum seekers, people with dementia, depression, anxiety, bi-polar disorder, people recovering from alcohol and drug addiction and people with lived experience of homelessness and rough sleeping. Family members, friends and mental health carers also shared their experiences. During Mental Health Awareness Week in May 2017, we got together with some of the people who’d helped us and held a workshop. We used this workshop to talk about what we’d found out and how common it was. Of those who took part in our survey, around 60% were able to plan ahead for times of crisis to some extent but 40% were not. People were using many different services at times of mental health crisis. The pathway to help and support is not always clear. Almost half did not know who to contact in an emergency. Some people who are already receiving mental health treatment and care may have a ‘crisis care plan’ in place (18%) but half (50%) didn’t have a plan but told us that they wanted one. Knowing which service to contact is difficult. People don’t know if they are meant to call NHS 111 or go to A&E. 5 6 Some people lose the ability to make good decisions when they are in crisis, so getting the right kind of help is important. Carers, family and friends often act as the voice of the service users and support to help them do so is vital. The information we collected gave us a very mixed picture of people’s experiences of services during a mental health crisis. The services that people were most likely to rate as “very good” or “quite good” are GPs (55%), community pharmacies (41%), ambulances and paramedics (34%) and A&E departments (31%). The services people were most likely to rate as “quite poor” or “very poor” are NHS community mental health services (41%) and GPs (24%). A great GP can make a big difference but people said this could “be a bit of a lottery”. Some people thought there would be, or should be, some kind of ‘fast-track’ into mental health services during a time of crisis. In Norfolk we have a Crisis Resolution Home Treatment team. Mental health professionals told us that there is a 4-hour, 5-day and 28-day response service for people with a mental health problem. People in mental health crisis can get a ‘blue light’ service like an ambulance (999 call), be taken to A&E by ambulance or by someone else and be seen by a mental health specialist within 4 hours. This is no different for a person who has a physical or medical crisis, accident or injury. The idea is that everyone has the same kind of access to emergency services, whether their need is physical or mental. In practice, some mental health service users and carers find this very difficult or they are unhappy because it doesn’t meet their needs. There are mixed messages about going to A&E. A lot of people are getting help and support from services provided by community and voluntary organisations. This can take the form of mental health telephone helplines, drop-ins, cafes, support groups, counselling and therapies. Many people speak highly of such services but are worried they might be seen as a replacement for good quality NHS mental health care. This work did not set out to purposely get feedback on the Norfolk & Suffolk Foundation Trust or their mental health crisis services. We often found that people talked about these services as being unresponsive and unsafe. We also heard genuine empathy for front line mental health professionals who are felt to be doing the very best they can. Our conclusion is that mental health crisis services are under-resourced and over-stretched and this issue requires urgent attention. Crisis care plans are important and more people want to have one. Messages on who to contact and where to go in a crisis need to be clear and consistent. Some people and services are especially good at making mental health service users and carers feel safe, welcome and well-cared for and others could learn from them to improve their own services. 7 1. Why we did this work 1.1 Background to this work The NHS Midlands and East (East of England) Urgent & Emergency Network has been given a time- limited opportunity to fund pertinent programmes of work which underpin the Network’s key role in the region.

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