555
Capturing the lived experience of mental health service users in Essex
October 2014
Contents
Foreword 5
What we did 7
Method 8
What we found 9
Theme 1: Continuity of care 9
Theme 2: Trust and trustworthy practice 14
Theme 3: ‘Treating me as a whole person’ 21
Theme 4: Choice and control – no ‘one size fits all’ 24
Theme 5: Communication and joined-up services 32
Natal and maternal mental health services 37
What should happen now 43
Conclusions 43
Recommendations to commissioners and providers
of services 44
Recommendations to Healthwatch Essex and ecdp,
and organisations like us 45
Recommendations to participants 46
Acknowledgements 47
About ecdp and Healthwatch Essex 48
Abbreviations
A&E Accident & Emergency department
ADAS Alcohol & Drug Addiction Service
CAMHS Child & Adolescent Mental Health Service
CBT Cognitive Behavioural Therapy
CDAT Community Drug & Alcohol Team
CMHT Community Mental Health Team
CPN Community Psychiatric Nurse
CRHT Crisis Resolution Home Treatment team
GAD Generalised Anxiety Disorder
IAPT Improving Access to Psychological Therapies
NEPFT North Essex Partnership NHS Foundation Trust
OCD Obsessive Compulsive Disorder
PALS Patient Advice & Liaison Services
PND Postnatal Depression
PTSD Post Traumatic Stress Disorder
SEPT South Essex Partnership University NHS Foundation Trust
Foreword
In February 2014, Healthwatch Essex filmed one of its ‘Sofa’ films on the back of the national Time to Talk campaign by Time to Change.
The film was made with mental health service users and carers from the Brentwood & Basildon area. Launched in March 2014, the film was applauded by commissioners and providers of mental health services as being one of the most powerful films made on the subject of the lived experience of mental health service users and carers.
Having analysed over five hours of film footage, Healthwatch Essex identified many recurrent issues affecting mental health service users and carers.
One notable theme was a perception held by service users and carers that people at the very top of the NHS and social care – people who were responsible for commissioning and providing services – never spoke to service users, and probably never met together, which was why services never seemed to be truly joined up.
‘There are a lot of assumptions in the service about what the patient needs and wants and that's not the way it should be. It should be them asking us "what do we need and what do we want?”’
The 555 Project was created to shine a light on the issues and act as a catalyst for change. Our aim was, and still is to empower people to share their diverse experiences with decision makers in the NHS and social care.
In partnership, Healthwatch Essex and ecdp have created an unprecedented opportunity for commissioners and providers of mental health services to come together and to listen, and to use, the lived experience of Essex mental health service users and carers. It is an opportunity to begin to shape the future of services for the next generation.
‘They need to listen to the experts - and the experts are usually the patients.’
Engaging with people and involving them in strategic decisions about health and social care, even co-designing and producing their own services will lead to better outcomes, for service users themselves, for staff in health and social care, and may even save money – which is a crucial message at this time of increasing demand and financial cut-backs. As one film participant put it:
‘The NHS can save millions upon millions of pounds just by having service users at the heart of their planning.’
On 07 October 2014, at a secret location in Essex, the 555 Project hosted the meeting that will begin to change the way lived experience is regarded by those responsible for services. This is our opportunity – realised in partnership between Healthwatch Essex and ecdp, as well as our NHS and social care partners – to let those participants of our ‘Sofa’ film know that their voices have been heard.
Dr Tom Nutt
Chief Executive Officer, Healthwatch Essex
Mike Adams OBE
Chief Executive Officer, ecdp
What we did
In August 2014, ecdp and Healthwatch Essex conducted a series of focus groups to listen to the voices of Essex mental health service users and carers. This was the 555 Project.
We wanted to discover people’s lived experience of mental health services in Essex.
We wanted to listen to people with a variety of experiences ranging from those who may have approached their GP for support or a counselling referral, or those who regularly receive care in the community, to those who have experienced care as a mental health inpatient in hospital. We were also interested in people’s experiences of specific conditions, such as postnatal depression (PND).
We met and listened to the lived experience of 33 people who have used mental health services provided in Essex.
The focus groups tackled three areas:
· Primary mental health services – care that people have received from GPs, NHS walk-in centres, and includes Improving Access to Psychological Therapies (IAPT) services;
· Secondary mental health services – care that people have received in hospital or in the vicinity of a hospital;
· Natal services, before or after pregnancy.
We also invited mental health service users, carers and family members to provide us with their feedback online.
‘I am glad that our voices will be heard.’
This report sets out the findings of the 555 Project. Whilst acknowledging that the sample was relatively small, through these in-depth narrative accounts, ecdp and Healthwatch Essex have been able to develop a picture of where mental health services are working well in the county, and where they could improve.
Our findings were taken to a secret meeting with commissioners and providers of mental health services in Essex on 07 October 2014. Five people from the five focus groups had five minutes to tell their story to those present, face-to-face, explaining the impact that the service has had on them through their own eyes. This is where the name of the 555 Project comes from.
Method
We held 5 focus groups across Essex, engaging with 33 mental health service users and carers:
· Two primary mental health service user groups, in Clacton and Brentwood;
· Two secondary mental health service user groups, in Stansted and Rayleigh;
· One natal mental health service user group, in Braintree.
We decided to engage people outside of the main towns that are usually the location for most engagement activity in order to give opportunities to those who often live further away from event venues and may not have been listened to in the past.
‘I do hope that something really positive comes out of the work you're doing because it’s appreciated by so many people.’
Each session ran for two hours and included signing in and out activities, story sharing and a mapping exercise on experiences of specific services.
What we found
Five key themes emerged from the focus groups and were confirmed via the online consultation. These were:
1. Continuity of care
2. Trust and trustworthy practice
3. ‘Treating me as a whole person’
4. Choice and control - no ‘one size fits all’
5. Communication and joined-up services
1. Continuity of care
Continuity of care was the most prevalent theme for mental health service users and for natal service users who experienced PND.
Participants were clear that continuity is vital for people with mental health conditions. There was a strong desire to avoid retelling painful stories. Many felt it was vital to see the same GP, Community Psychiatric Nurse (CPN), midwife, health visitor or psychiatrist over a period of time, as this is likely to engender a trusting and knowledgeable relationship.
Some participants found their GP to be brilliant (for example, by providing a private phone number for emergencies or alternative out-of-hours contact numbers). Others suggested that GPs need to be more forward thinking and proactive in their approach.
One man said his GP had a brilliant insight into mental health.
He went into his doctor's for an ear infection and his doctor, who knew him well, recognised a change and asked about his mental health. He has since accessed medication and had therapy through Therapy For You. Following this, he has seen his GP every month for the last 4 years. He feels that he has had great experiences but that services are a little stretched.
It was suggested that proactive steps such as GPs booking follow-up appointments, taking more time in each appointment, and booking regular drug reviews would be beneficial.
‘I would have liked to have seen my GP to be more proactive around my mental health. My GP relied on me making the appointments.’
The Crisis Resolution and Home Treatment team (CRHT) was flagged as one of the most important mental health services. The general consensus was that it was a good concept, which would benefit from greater continuity in terms of professional engagement.
Some participants have received a lot of consistency seeing the same CPN every day, gradually decreasing in frequency until they were accessing support monthly.
Experiences of the Crisis team were varied and inconsistent. Some felt there was a significant lack of continuity, encountering a different person at each contact. People expressed frustration at having to tell their story repeatedly.
Case StudyOne lady said the CPNs from the Crisis team saved her life. She had the same CPN for 7 years and has found the support life changing. She said that she could phone or email her CPN whenever she needed and developed a very good professional relationship. She feels the treatment she received from North Essex is the best treatment she has ever received. She has also accessed Cognitive Behavioural Therapy (CBT) which she found to be very effective.
‘I’m the same person every time I go; I want them to be the same.’
Regular check-ins following a crisis was something participants would have liked to have seen.
Some people experienced services as being irregular and sparse, CPNs being late, the waiting times being too long and appointment times being vague, either morning or afternoon but not a specific time. It was suggested that an increase in CPNs would be beneficial.
Some expressed that when they experienced crisis, the Crisis team was reassuring to family members, providing advice and reassurance. Family members benefited from long, supportive calls but those accessing the services themselves did not share the positive experiences. It was agreed that there needs to be more consistent help for families too.
From an outpatient perspective, participants felt strongly that there should be better continuity when seeing the psychiatrist. People felt that appointments should be regular. Every 3 months and not every 5 or 6 months as it currently is sometimes.
‘In the Derwent Centre in Harlow I saw a different psychiatrist each time.’
Participants expressed frustration at what they viewed as a postcode lottery, with services varying dramatically depending on where you live. People agreed this was unfair and confusing when navigating the system and seeking to understand entitlements. It was suggested that everyone should receive the same opportunities for care and choice, regardless of location.
Some natal service users had positive experiences with midwives, receiving one hour appointments from the same midwife on a regular basis.
‘My midwife was aware of my history.’
However, some participants reported a lack of consistency and many received visits from different midwives at the beginning of their journey of becoming a mum.
Case StudyOne woman had her son in 2010 and describes herself as having had a very obsessive compulsive disorder (OCD) lifestyle. She experienced a traumatic birth. Before experiencing PND she didn’t know anything about it. After giving birth she stayed inside her home for 4 weeks and was too afraid to go out. She felt like a failure, concerned that she could not cope with looking after her baby. She received services from her health visitor and her GP. These weren’t very helpful in recognising the signs of PND and initially advised her to change her eating habits. After having her second child she felt the services had improved. She found the midwife fantastic. She received hourly sessions with her midwife, instead of the usual 10 minutes and had the same midwife each time. She feels that had she received this support earlier with her first child, it would have made a significant difference to her.
‘I had a really fantastic midwife. After having a traumatic birth with my first I was very worried about the second birth, she was very supportive.’
The broad experience was that continuity made a big difference to the effectiveness of services.
SummaryClearly health professionals move on from time to time and services need to operate across a wide delivery window. It is also accepted that an individual may receive support from a number of disciplines.
However, where possible, and certainly in terms of any formal/planned psychological intervention, it is helpful for the individual to work with the same practitioner within a particular discipline or role. This consistency of practitioner is hugely important to people accessing services and not everyone’s experience currently.
Potential next steps and solutions
Training and awareness-raising which highlights the difficulties and impact of inconsistency in quality and delivery of frontline mental health services and support, particularly for staff responsible for coordinating and deploying staff resourcing.
Action to help services be less dependent on locum and temporary staff.
2. Trust and trustworthy practice
This theme incorporates two aspects of trust: professionals being able to listen to (and trust) an individuals’ previous experience and knowledge of themselves, and the trustworthy practice of professionals. Here experiences were mixed.
Participants’ experience of their GP varied. Some people were pleased that they were seen quickly and felt that they were taken seriously. They felt that their GP did not rush them and listened. Some GPs were reported as good at identifying indicators and asking questions to get beneath the superficial answers.