Januar y 2017
â€œFailure to listen to families is the single biggest challenge facing mental health careâ€? The thematic review A selection of your comments, opinions and perspectives 1
Welcome Welcome to Partnership Matters. Rather than having a separate newsletter for staff and one for members, we’ve decided to merge them. Keeping production costs down is one reason for this (we’re also getting fewer copies printed for this reason). But we also felt it was important to share the issues we’re talking about to staff with our wider membership. An important example is the independent, thematic review of homicides we commissioned and published in October 2016.
“We need to keep talking about the review, because it gets to the heart of what it is we’re here to do”
The review resulted in a great deal of media scrutiny and criticism of our services. This can be tough to hear, especially when I know how hard staff work. But in this situation, when it’s clear there are things we need to improve as an organisation, it’s really important to say sorry. And that’s what we did. At the same time, it isn’t good enough for us to be one of those organisations which says ‘lessons will be learnt’ and then moves on. Patients, families, staff and the wider public deserve better than that. We need to keep talking about the review, because it gets to the heart of what it is we’re here to do: provide safe, compassionate, high quality care to patients and families. And that’s why we’ve devoted so much space to it in this newsletter, despite the fact it’s not an issue which makes for easy reading.
I want to echo what our chief executive Colm Donaghy said when he spoke publically about the review: we want to be an organisation which learns when things go wrong rather than one where people get blamed if they make a mistake. Our staff work under a lot of pressure, make really difficult decisions every day and often get things right. We also get things wrong. We need to be up front about that and work together, with patients and families, about what we need to change and do differently. I hope the approach we’re taking to this review signals that we want to do things differently at Sussex Partnership. This is all about improving the lives of people who use our services. There’s nothing more important for us to be talking about and focusing upon. Caroline Armitage Chair
The death Blunders of our by trust son could ‘ended in n have bee 2 killings’ thematic prevented The review
Patient killings review is critical of trust Trust is criticised in how it dealt with killings involving patients
Together with NHS England we commissioned a report to look at how we learn when things go wrong. Family members This issue looks in detail at that learning.
demand public inquiry into killings
Review looks at NHS killings
In October 2016 we published an independent review of homicides involving people known to Sussex Partnership. This is something we’d commissioned jointly with NHS England. For this issue of our newsletter, we wanted to capture different perspectives from people about the review, what it tells us and what we need to do about it. And we wanted to give people the opportunity to be candid and unedited. You might wholeheartedly agree with some of what’s said. And you may completely disagree with other points. These are personal perspectives, and the point of publishing them here is to continue the conversation we need to have about using the thematic review to help improve services for patients and families. If you’d like to share your views about any of the pieces you read here then please email us at firstname.lastname@example.org.
Better care could have saved pair from their violent end
He killed his wife. But they could have stopped him
Do let us know if you’re happy for us to publish your thoughts in our next issue, anonymously or with your name included (which is entirely up to you). We won’t be able to publish everything, but we’ll use as many of your contributions as we can. And if you use social media, let us know what you think on Twitter using the hashtag #SussexPartnership @withoutstigma.
Health trust failed to stop murders by mentally ill 3
“I generally get very angry when I see news coverage about mental health. They make it out that people with mental health problems do not have any human rights
The patient Fiona has been a patient in acute mental health care. Here she talks about her own experience
“It is extraordinarily frightening not to have control of your mind”
hen I spoke to other patients about care plans they would say ‘they keep banging on about care plans, I don’t want to talk about it anymore’. When you’re in a desperately awful state to have some person with a clipboard in front of you, you don’t want to take that responsibility for your own care you say ‘I don’t know, you sort it out’. Sometimes it is too much for a patient to think about. I have sat in front of staff and known what answer to give to the questions they’re asking. I have very carefully and deliberately misrepresented my mental health to staff on a number of occasions and because I am intelligent and articulate I have been very successful at times. I generally get very angry when I see news coverage about mental health. They make it out that people with mental health problems do not have any human rights. They assume that somebody with mental health problems is not intelligent; that you should be treated as a child not a capable adult. This is a hospital, not a prison.
Whether I talk about my mental health depends on who I’m talking to. If it was in relation to work I wouldn’t mention it at all. I am an opera singer and that world can be quite volatile and stressful. I think it would put people off booking me if they knew I had been in a psychiatric ward, people would think I was flaky, unreliable. I’ve started to think about dating again but then I think, how would I tell someone all of that? If I had got to know someone and then told them I had mental health problems and never heard from them again, that would really hurt me. I think the stigma of long term mental illness is worse now. The social stigma of having depression has almost completely lifted, it’s acceptable to take antidepressants for a short time and then you’re ok but not long term. I think that is a huge problem because people are saying you should be able to manage without medication, to come off them, but you can’t. It is extraordinarily frightening not to have control of your mind. It is terrifying having psychosis, seeing things you know aren’t real and not being able to be in control of your emotions.
You can read this piece in full at www.sussexpartnership.nhs.uk/stories-fiona
NEW CARER GOVERNORS If you are a carer who wants to talk about your experiences with us, our three new carer governors want to hear from you. Bryan Goodenough, Mark Hughes and Sophie Campbell all have experience of being unpaid carers looking after people with somewhat differing mental conditions. A big part of their role is to represent carers. They would like to hear from you if you have comments, suggestions or thoughts about how the trust can better support you, and any concerns or problems which they might be able to help with.
The lead governor Elizabeth Hall tells us her views on the report from a governors point of view
’m so glad that Sussex Partnership decided to carry out the review. It shows that we have nothing to hide. It shows that we are honest and open, and we’re not afraid of being so. It demonstrates to our patients, and their families, carers and friends, that we are committed to recognising our mistakes and acting on them. It was the right thing to do and I’m happy we did it, even if it was uncomfortable reading.
One of the big things the review told us was that we need to improve how we work with families and carers, and we’ve already started making changes to the way we involve them. Their feedback is changing the way we do things and will shape how we do things in future.
I’ve been involved in mental health on and off for 60 years and I’ve seen big changes in how people are treated. These days it’s ok to be more open and talk about things but there is still a stigma that needs to be busted. There is also a dangerous assumption that anyone who kills has a mental health problem – the reality is that these cases are rare. Mental health is a hard area to work in and staff do a tough job in difficult circumstances, but ultimately everyone – governors, staff, patients, families and carers – want to see things improve and the review has given us the chance to do that, honestly and openly.
You can read this piece in full at www.sussexpartnership.nhs.uk/stories-elizabeth-hall
Bryan says: “We are very conscious that carers own health and wellbeing is vitally important and often they suffer from stress, depression, resentment guilt and feel lonely and socially isolated. We have access to members of Trust staff who are directly involved in the caring side of mental health and also to many organisations outside the Trust who can provide very useful help and assistance.” Governors can’t act as advocates for individual cases but they can use your experiences to help improve things for all carers. You can contact the team on: governors@sussexpartnership. nhs.uk Or through: Membership Office Aldrington House, 35 New Church Road, Hove, BN3 4AH. You can also call 0800 053357 or email email@example.com
or me, the thematic review shows we’ve got to utilise the resource of lived experience properly. To do this the Trust must fully understand the role of real peer support. It’s not about buddying and it’s not an apprentice scheme to become part of the workforce (though both of these are positive and welcome). Done properly, it’s about a person with lived experience of debilitating distress having frank, eyeball to eyeball conversations with someone whose situation is similar to where they have been. You can’t – indeed shouldn’t – do that if you’re a clinician. And you can’t do it if you’re seen as being on the ‘inside’; professionalised peer support isn’t authentic peer support. You have to know what it’s like to have had a breakdown, to be psychotic, to be terrified. You need that shared experience to have frank, precious, insightful, truthful conversations about what’s really going on for someone; conversations that can alert clinical teams about real issues. Peer support is something only peers can do and lead on.
The non executive director Anne Beales brings her experience from the third sector and having used mental health services to her role as non executive director at Sussex Partnership
As far as I’m concerned, getting to grips with the issues that come out of the thematic review will involve people with lived experience sharing power. That involves challenging the status quo. People with lived experience may need to ‘get in the way a bit’ to help professionals see things in a different way. People who have used services can lead the way forward based on knowing what works and what hurts. I’m a naturally optimistic person and I think this approach of combining expertise will become the dominant force for good for patients, families and mental health staff in the future. I’m a non executive director who has broken down and experienced great troubles. These experiences were the most terrifying of my life and for my family. Like so many others, I refuse to let these experiences be anything less than useful to people who are still terrified themselves.
You can read this piece in full at www.sussexpartnership.nhs.uk/stories-anne-beales
“Every story I do starts from the perspective of the patient and their family, rather than the system
The journalist Michael Buchanan is the BBC’s Social Affairs Correspondent. You can find him on Twitter @BBCMBuchanan
et me start by shocking you. I’d like to commend this trust for ordering the recent thematic review into homicides by patients. The publicity surrounding the killing of Don Lock by Matthew Daley did put pressure on the trust, but many other NHS bodies would have resisted holding a broader inquiry, especially as I suspect the leadership of Sussex Partnership knew the report would not make comfortable reading. So there you have it, praise from a journalist for the actions of a mental health trust. I doubt many of you thought you’d ever live to see the day. I’ve spoken to many psychiatric staff in recent years who’ve bemoaned the coverage of mental health care, believing we always focus on the failures without understanding the pressures. From my own perspective, I don’t think that’s fair but I do think that a lot of mental health care needs a fundamental update. Every story I do starts from the
perspective of the patient and their family, rather than the system. Do that, and you’ll realise the problems. Ah, the families - too often seen as problematic. Of course they can be, but they are more usually the source of valuable information. Incredibly, patient confidentiality is still used as an excuse to prevent professionals from learning more about an individual. That failure to listen to the family is so frequent in psychiatric care that it is, in my opinion, the single biggest challenge facing NHS mental health care. Lack of a risk assessment, no proper care plan, failure to listen the the family – too often, the only thing that changes in an inquiry into a suicide is the name of the victim.
aspects of the system are, I believe, simply broken. The very best trusts, the very best clinicians, are redesigning care to make it much more patient centred, more open and collaborative. That is not just a case of redesigning systems, it’s changing the culture within an organisation so that patients and their families are genuinely at the heart of modern mental health care.
Many of the stories I cover come from a belief that the NHS can do better. Sure, money is tight and demand for mental health services is growing. But many
You can read this piece in full at www.sussexpartnership.nhs.uk/stories-michael-buchanan
he publication of the thematic review – and its coverage in the media – made me think that I work for an organisation that wants to have honest conversations. It’s really sad that most of us have grown up in a system that isn’t used to saying sorry. Too often, the kneejerk reaction when something goes wrong is to find someone to blame. If we were to treat everybody as if they might commit an awful crime we might also be criticised for not being compassionate. It is about getting that balance right, being aware of our potential blind spots and putting in place protection against potential harm. One of the things we are taught very early on in our career is the importance of confidentiality. So, many of us are concerned we have to hermetically seal the information a patient tells us. It is a patient’s right to have their information kept confidential and they have to trust us. They need to know they can talk openly about what’s concerning them. 8
The clinical director As one of our clinical directors for adult services in West Sussex Dr Brian Solts, clinical psychologist, has oversight of community teams, crisis care and hospital teams
However, if we know there is a suspicion or clear risk that someone is going to get harmed, we have to act on that. And if a person is clear they don’t want their family spoken to, maybe for very good reasons, then that is their absolute right. We have a duty to respect that. We do have to work differently but we have to remember that there are no machines in mental health to read minds. The care we provide relies on trust and the ability to have difficult conversations.
“It is about getting that balance right, being aware of our potential blind spots and putting in place protection against potential harm”
You can read this piece in full at www.sussexpartnership.nhs.uk/stories-brian-solts
“We have been in that position many times, but luckily our care coordinator listened to us
The carer The report told us we don’t us we don’t include carers enough in our patients’ care. One carer tells us her experience
saw the coverage of the report on the news and the first thing I felt was just so sad. Not just for the victims and their families, although of course it must have been indescribably traumatic for them, but also for the service users and their families. They had all been let down. Thankfully nothing so serious has happened to me but I have been caring for my son for 16 years. He has schizophrenia and is what you might call a revolving door patient; he’s been sectioned 12 times.
delusional just by the way he walks. I know when he has stopped taking his medication.
telling you and that has worked, with my GP, with others. Carers should be told to do that and be confident. Often we are not.
I remember professionals telling me he was not ill enough to be admitted to hospital. I’d have to wait for him to get worse. It really is the worst of all the times, that is the time I feel the most frustrated, no one is listening, there is all this evidence. I know we have got a 12 week window from when my son stops taking his medication to when he is going to be really unwell. I know that now just from all the times he has been sectioned. In this aspect of his illness I have the expertise; that is the message clinicians need to hear.
I personally have been lucky I have been listened to. The community teams are wonderful, we are very lucky but there needs to be something between the community team and the crisis and hospital teams.
I felt guilty about the feelings I had but my perspective was from the service user’s point of view. I have been in that position, I have been assaulted by my son lots of times, I’m reluctant to go to the police because I know he’s not bad he is just ill but I know my safety is important too. It is such a fine balance to get right.
I have learned to start writing a crisis diary as soon as I think he is becoming unwell. I just bullet point things that he has said that are odd, that start to ring alarm bells. For example his vocabulary changes, he gets into low level trouble in the pub, he takes a bus to Gatwick and stays there all night. I can send this to my care coordinator and that gives her the evidence she needs to intervene, and often the care coordinator is the gate keeper to interventions.
When I realise my son’s beginning to get unwell my heart sinks every time. I know him so well that I can tell he is becoming
I think I became very skilled at saying to people I know you can’t comment on this but you are going to listen to what I’m
I think because we had no history of mental health in our family, I knew nothing about psychosis or schizophrenia. Being the type of person I am I tried to find out everything about it, as much as I could. That is the important thing because it is so dramatic in the early days. The first time someone is sectioned it is so scary, a locked ward is a scary place. The first time he was sectioned I was waiting for hours in a ward with other patients and I’m ashamed to say it but I was scared of them. I’m not now of course but I was then. All that should be taken into account. The whole trauma for the carer, the stigma.
One of the families said they had been asking for help for a long time. I felt so incredibly sorry for those people. I thought that could have been our family. We have been in that position many times, but luckily our care coordinator listened to us.
I was looking after my son for eight years before I recognised I was a carer. I thought I am just being his mum, I’m working full time so I can’t be a carer yet my son had this horrendous illness and was always getting sectioned.
“Looking after our emotional wellbeing is as important as looking after our physical wellbeing”
Well, well, well We ask Consultant Clinical Psychologist Dr Nick Lake for his pearls of wisdom on looking after our mental matter.
oes everyone have to work to keep their mental health in good order? One of the positive things that is emerging in modern society is the increasing recognition that looking after our emotional wellbeing is as important as looking after our physical wellbeing. If we can look after our emotional wellbeing we are likely to be happier, have more friends, be more successful, and live significantly longer. And the evidence is clear – taking active steps to improve our emotional wellbeing – to be more happy – has huge impacts in all areas of our lives. If you could give three top tips to help people improve their mental wellbeing what would they be? Number one, to recognise the fact that we can all suffer emotionally at times and that’s normal. One in three people are likely to be diagnosed with a mental health problem at some point in their lives. But we can all do something about it. The NHS now has a much wider range of services, including a much greater amount of psychological therapy, that can really make a difference. Number two, recognise that your emotional state is something you can actively work on. There is a huge amount of advice and tips out there on how to be happier. Some examples include staying fit, being mindful, working on developing
a core sense of meaning and purpose, developing a valued social role in the community, and focusing on relationships that bring you up not down. My third tip relates to something that we are just beginning to fully understand. Of all the factors that improve our mental health and wellbeing, doing something for other people has one of the most important and significant positive effects on our mood and wellbeing. People who are able to give back to society feel happier, more valued and more content than people who don’t. So go out there and help people, or volunteer, and try to make something a little better in the world. It will help you too. What has changed in people’s view of mental health in recent years? I’ve worked as a psychologist for twentythree years and I think there are two things that have really changed during that time. Firstly, there is the recognition that emotional wellbeing is all of our business. You find in popular magazines and newspaper articles really good advice to help us live happier more content lives; that just wasn’t the case twenty years ago. The second thing is the huge number of therapies that are now available through the Improving Access to Therapies Programme (IAPT). The Government invested £600m in making sure that core therapies are
available for everyone who needs them. Finally I would say some of the content of new therapies have gradually become incorporated into our daily lives so that the practice of therapy and the practice of working on remaining emotionally healthy have become intertwined. Take mindfulness for example, that stems from Buddhist meditation practice. This is now a practice used by many as a routine part of their daily lives to feel more connected and feel better emotionally – not just when they are feeling down. What would you tell people to stop doing to help their mental health? First, stop procrastinating, get out there and do some exercise. It really makes us feel better – physically emotionally. Second, stop, think about and change the patterns of behaviour – the things that you are doing – that are not contributing to your happiness. For example, use this time to work out which friends make you feel good and which don’t, to break habits that are unhelpful for you, and to stop doing things just because other people think you should. For young people in particular, I cannot emphasise enough how careful you have to be about taking legal and illegal highs and drugs. You are playing with your future mental health. The final thing I would encourage you to do is to start taking responsibility for your happiness. Make sure you just take time 11
CONTACT US Free IAPT or wellbeing services are available across the county to help with stress, anxiety and anxiety related conditions, and low mood, for adults aged 18 and over. They offer counselling, cognitive behavioural therapy (CBT), other talking therapies, mindfulness and much more. You can refer yourself to these services by contacting them directly or through being referred by your GP. every now and again to step back and create a bit of space to think about your life and what is happening to you. Life can be so busy, we can be stuck in a rut, entirely miserable but somehow caught in a routine and patterns of working that we can’t get off of. Stop and think about what’s really important to you. One of the questions I often use in therapy is to ask people to imagine being at their own funeral. I ask them to bring to life what they hope people would say about them, what they have achieved, the connections they have made. What they hope people would say at the funeral is often very different from the priorities they are currently working to. Start working to the priorities that are more concordant – that fit better – with your core values. It will make you happier. What’s the most common thing that people contact wellbeing services for? Feeling anxious – closely followed by feeling depressed. Some people can feel so anxious that it means that they can’t cope with everyday life. For others, feelings of social anxiety and awkwardness make social engagements a real struggle, and for some, being anxious about presentations or other work performance can really limit what people can achieve in their careers. So, being anxious can really hamper our lives at times and yet there are such simple techniques that can help. So go and get help. Depression is another common problem. Depression is such an overwhelming experience for people who suffer from it. 12
Seventy per cent of people that come through our wellbeing services have really significant improvements to their quality of life
By its nature it cuts you off from people, makes you want to withdraw into yourself, hide under the duvet, and stay away from people, but that is the worst thing you can do. Depression feeds on that. If you can admit that you’re feeling low, that you’re struggling, then you can get help. Seventy per cent of people that come through our wellbeing services have really significant improvements to their quality of life as a direct result of the help they get. Over 50% are completely free of symptoms. If someone’s worried about their mental health what should their first step be? Contact us. All our wellbeing services have websites, so you can ring us or email us and refer yourself and we can then help work through what you need. If you want to talk to someone really urgently then contact your GP. They are familiar with the range of services out there, including services for people in crisis, and can advise you on the best course of action. Take that first step - it is the most difficult one – but once you have done it your life can begin to change for the better.
There are three services depending on where you live. East Sussex – Health in Mind Delivered in a partnership between Sussex Partnership NHS Foundation Trust and Turning Point www.healthinmind.org.uk 0300 00 30 130 Brighton and Hove - Brighton and Hove Wellbeing service Delivered in partnership between BICS (Brighton Integrated Care Service) Sussex Partnership NHS Foundation Trust, Turning Point, Mind in Brighton and Hove www.bics.nhs.uk/patientinformation/brighton-andhove-wellbeing-service 0300 002 0060 West Sussex – Time to Talk Delivered by Sussex Community NHS Foundation Trust www.sussexcommunity.nhs.uk 01903 703542
Music to our ears These great photos were taken by a resident when punk rock band The Weird Things performed at our medium secure hospital; the Hellingly Centre
“ They’re heading for a crash, you’ve just got to hope you get there and change the direction” We spent a day with one our crisis teams to find out how their day works
8.30am The crisis team are gathering for their morning handover. At the beginning of each eight hour shift the team go through all their patients. Each is discussed, including an update on the latest information and a plan for what happens next. Some of the patients are well-known to the team, stabilising and keeping well with the support of community teams until a trigger, something that escalates their illness, means they need more help. The crisis team take over, schedule in more visits, speak to their psychiatrist, their care coordinator, together these professionals look at the medication they are on, at their support system. And they help with their recovery so they can, once again, be cared for by their community team. ‘It’s like you can see a train going at a hundred miles an hour towards a wall’, one of the team tells me; ‘you know they’re heading for a crash, you’ve just got to hope you get there and change the direction before they hit it’. Other patients are brand new to the team, referred in by another mental health professional who is worried they are at risk. The team makes a clinical decision, are they in crisis, is there an immediate risk? The levels of referral are high, the team has to be strict about their criteria, everyone has a need, it’s where that need is most urgent that they have to concentrate their efforts. Tim has been working in mental health for many years. He says: ‘Everyone we see has had suicidal thoughts, we have to look at the immediate risk. When I speak to newer members of the team I always say you have to go on what is in front on you at that moment in time. If something happens you think “I should have spotted that, I should have stopped it happening” but you have to go with the information you’ve got and with your gut.’
10am “we help them cope with the life they have” The crisis team is there to keep people out of hospital where they can, to give people the support they need to stay in their own home. Team leader Melissa tells me: ‘Hospital is important, it keeps people safe when people are very unwell. But it isn’t always the answer. People are unwell; they have things in their life that are hard to cope with. We take them into hospital, we give them their medication at the right time, we make sure they eat, they get support, and then they come back out and they still have to face that life. We help them cope with the life they have.’
The first visit of the day takes us to Maurice; a 90 year old man. He had been in hospital for an operation and was given morphine for the pain. In some cases morphine can cause hallucinations. The combination of losing his independence by being bedbound and the hallucinations kick-started depression, something he has lived with in the past but hadn’t bothered him for many years. As we wait to go in Tim, the team member carrying out the visit, tells me when they first saw him he said if he had a gun, he’d have used it. The person I see is in recovery. ‘I wouldn’t do that now’ he tells us, ‘not at the moment’. But he adds: ‘I feel like there’s a black hole, I’m on the edge and I’m fearful of slipping back into it.’ Tim is calm and confident. He chats about Maurice’s family, talks about his cats, his garden, all the time checking what support he has. He directs his first questions to Laura, Maurice’s wife. She’s been unwell lately, a fall left her in hospital, she was told it was caused by pure exhaustion. ‘If you had access to all your medication Maurice, would you take it?’ he asks. It takes a moment’s thought and then ‘no, not at the moment’ he replies. ‘He knows how to talk this one’ Maurice tells me, ‘he’s marvellous’. I’m struck by the bond the team has built up with this man and his family in just a few days. No notes are taken through the hour we are there. Tim remembers the name of the children, the grandchildren, the cat, he remembers every detail. He asks if they are ok to have their next visit on Monday; today is Thursday; he’s downgraded their risk while we’ve been talking. We leave Maurice and Laura with numbers to call and what to do if there is a change. ‘Remember’ he tells them, ‘you’re more of a nuisance if you don’t call than if you do, if there’s something wrong we need to hear from you.’
11. 30am The next visit is a younger woman, Nicola, suffering with severe anxiety and low self-esteem. She’s always battled the illness but a recent break-up has escalated things. She’s staying with her mum and dad as she can’t be on her own at the moment. ‘I just feel like it’s an ordeal I have to get through, but what for? What’s the point?’ She can’t stop moving, she’s rubbing her legs, twisting her fingers. Zoe explains to her this is a physical reaction. ‘Your body’s gone into fight or flight mode. There’s adrenalin rushing through you in waves, you have to use that
adrenalin somehow and then you’ll be calmer. ’She asks Nicola to think of things she could do when waves of anxiety come over her. Nicola is tentative, her self-esteem is so low she’s unsure of everything. She slowly comes up with running on the spot to use up the excess energy. Zoe adds in the idea of using a stress ball to occupy her hands. These little things are to give her focus, to break down the overwhelming feeling that Nicola is out of control. ‘I’m just stupid’ she says, ‘I’m worried you’ll think I’m stupid. Every time I try to be positive my mind tells me no, I’m not going to let you do that, I’m going to make it hard for you, it won’t let me.’ Nicola’s mum and dad look on, her mum is a carer for her dad already, there are tears rolling down his cheeks and she passes him a tissue, squeezes his hand. On the other-side she’s got Nicola’s hand. 15
1pm Members of the crisis team, the community team, a psychologist, a psychiatrist and a third-sector organisation are all in the room to discuss one case. Mark has been very unwell for some time. He’s sleeping in his garden as he doesn’t feel safe in his flat and is travelling to other areas of the country on a regular basis and indulging in risky behaviour. He has chronic post-traumatic stress disorder caused by abuse he suffered as a child. At the moment Mark has formed an attachment to one organisation. He’s ringing and texting them constantly, taking up much more time than they are able to give. The community team want to transfer his care to the crisis team as he needs so much support. The crisis team are worried. ‘He’s been this unwell for a long time, we can’t fix that in six weeks. He’s not in crisis he’s very unwell.’ The people around the table agree but there‘s no easy answer. The crisis team can only hold people for a maximum of six weeks, hospitals can’t keep people in indefinitely. Where there is a chronic need, where does that person go? They develop a plan to look at providing him with some short term support.
2pm Luke has been on the phone to the team overnight. He’s been in hospital recently following a breakdown but was doing ok, he’d returned to work, a high-pressured management job. However following his first day back he came home to a letter from his bank. Money was short, he’d been put on statutory pay whilst off sick in hospital, his anxiety was growing. When he called he told the team he was heading to the railway. He couldn’t see a way out. The team asked about his children but he said they were better off without him. When we arrive he’s calmer. ‘I didn’t sleep at all, all night my mind was racing. I was so scared, I just thought I had to ring. But the fact I rang is massive, such a step forward.’ Melissa has brought a prescription, medication to take the edge off his anxiety. She asks him if he’s been out. ‘I haven’t, I spoke to work and they’re good but everything wears thin in the end doesn’t it? I was going to go for a walk, I thought that might help but I think, if I can do that I should get myself to work, sort it out’. He talked about his first day back: ‘I was on the motorway, everything felt like it was going so quickly. I pulled over; it felt like I was having a panic attack. I normally thrive on being busy, yesterday it just felt like everything was going 100 miles an hour; it’s ridiculous.’ 16
“he’s not in c isis he’s ve y unwell”
3.30pm Carla’s been discharged from an acute mental health ward this morning. She’s been known to the crisis team for years. She’s often suicidal, being picked up by police. Melissa brings her a sleep diary, she asks how her reading is, the answer’s not confident so she talks her through it. How much sleep do you get? What caffeine or alcohol do you drink? Do you nap during the day? Carla’s sleep is disrupted, she knows it’s one of the things that keeps her well so she promises to do the diary. Melissa asks about plans for the rest of the day, does she have food in? She’s got a friend taking her out for a drive, he’s worried about her. Melissa asks if she can talk to him about Carla’s care, she’s given her mum’s details but said it’s unlikely she would talk to the team. Carla agrees. ‘It’s the best I’ve seen her’ Melissa tells me as we leave. But she’s under no illusions; she knows she will go down again. And the team will be there to catch her.
AS A CARER, WHAT HAS THE TRUST DONE WHICH HAS FRUSTRATED YOU?
What am I doing here? Jacqueline Clarke-Mapp is our first ever Carer Leader. Her role is to improve how we listen to and work with carers
WHY ARE YOU HERE? I wanted to help the organisation think family, carer, supporter. This role gives me the access to have ongoing influence at a senior level. It moves carers away from asking for something to change and it being prioritised or not. Being part of decision making from the outset and asking ‘ how are we connecting with carers?’, that makes a big difference. OUR STAFF WORK WITH CARERS EVERY DAY, WHAT EXTRA DO YOU BRING? Care has to be a joint process. I want to work with colleagues to work out how we make this process more systemic and routine. There is information that carers do not know; for example, a person being cared for can say in their advance statement that their carer can have the key to their flat, even if when they’re unwell they say they do not want anything to do with them. If
that information is set out at the beginning it is so much easier for everyone, especially when navigating the often challenging issue of confidentiality. We need to be clear about what information we can give without breaching confidentiality. DO YOU KNOW WHAT CARERS ARE GOING THROUGH? I have a person I care for who accesses mental health services. I want to amplify the voice of carers. I don’t think there is one carer that can represent all carers. It is as much about the values and behaviours that improve care as it is about individual cases. I will be working with our organisation, other organisations and carers, going to carers’ groups and not just asking for information but feeding back about what we’ve done with that information. Saying ‘you said these things weren’t good, what do we do about them to make it better?’
A clinician made a controversial decision about care but wanted me to rubber stamp it before going ahead. I was invited to a ward round, that was the first time I had met them. They opened by saying ‘we’ve decided’ when I questioned who the ‘we’ was, the rationale for the decision and made it clear I disagreed, they didn’t go ahead. I didn’t feel I was treated with respect. I had to carefully manage the power dynamic and my almost overwhelming anxiety level, which was extremely difficult. We shouldn’t put anyone in such a difficult situation. I felt I was being asked to make a major decision under duress, which impacted negatively on my wellbeing. WHAT DO YOU WANT TO SEE CHANGED? Give carers the practical tools they need. Help carers understand how we deal with confidentiality and how they can engage with us on navigating that. Give more emphasis to our Recovery College, at the moment we give the impression it’s only for people with mental health problems, not for carers. We need to do a lot more in preparing carers for meetings in our environment so they know what to expect. The letters we send out need to say, ‘bring a friend or family member with you as support for every meeting’. We need to make sure we’re identifying carers and record them on the electronic system. WE HAVE HAD ACTION PLANS TO INVOLVE FAMILIES AND CARERS BEFORE. WHAT WILL BE DIFFERENT THIS TIME? I want to work with colleagues to really understand how we implement the actions in a plan. If we have a problem with personal safety, just putting ‘involve families’ on the action plan won’t fix that. What does that actually mean? What does it look like? I spoke to a team who were having a circular issue with a family. I said to them, ‘what is the carer trying to achieve’ and they said ‘we haven’t actually asked them that’. We too often react to a complaint without getting to the heart of what the issue is. Trying to second guess a carer is not a helpful approach. 17
Heads On news Heads On is our charity, supporting projects that enhance patient care and make a real difference to the people that come to Sussex Partnership for help.
Springwell Improving care for people with complex learning disabilities Heads On developed Springwell in partnership with the Aldingbourne Trust and Brighton & Sussex University Hospitals and it is the first NHS project to give people with complex learning disabilities the opportunity to redesign how a secondary care learning disability service supports them. It will design a new way of supporting people on referral, equipping them with the skills to better understand the service, their rights and the role they can play in care planning leading to shared decision making about their care. Springwell launched this Autumn and Lucy Westcott, project coordinator, said: “We’ve made a great start with our focus group, who call themselves Team Springwell. It’s so important to establish a safe, supportive environment where people with learning disabilities feel able to say what they think and be truly heard. Springwell will result in positive changes that will empower people with a learning disability to understand and be a part of their care”. Springwell has been made possible thanks to a grant from Health Education England, Kent, Surrey & Sussex.
Make a difference in 2017! Could you be a Heads On Hero next year? Join one of our charity challenge fundraiser teams and play your part supporting patient care at Sussex Partnership Vitality Brighton Half Marathon, 26 February 2017 - One of the most popular running events in the south east the Brighton Half is a fantastic run with great crowds and a brilliant atmosphere. With a fundraising target of just £350, sign up online by 20 January. www.headsoncharity.org/brightonhalf 18
Prudential Ride London-Surrey 100, 30 July 2017 - Be part of the very first Heads On team! Would your legs hold out on the 100 mile route made famous by the world’s best cyclists at the London 2012 Olympics? With just five places up for grabs, sign up online to secure yours now. www.headsoncharity.org/events/ ridelondon
How have you helped? Thanks to you, we can support projects all over Sussex Partnership that make life that bit better for our patients. Here’s a taster of some recent projects: £215 for outdoor equipment on Bodiam ward £70 sensory stress relievers for Coral ward at Langley Green £149 for a new TV in the ladies’ lounge at Woodlands £2,995 art installation at Langley Green £165 digital piano and portable CD players for Brunswick dementia ward £1,275 for presents for people who are in hospital at Christmas
Heads On Heroes We are hugely grateful to everyone who fundraises for us. Ian Puttock raised £1,100 ‘Moonfest’ at the Half Moon Pub in Hildenborough raised £432 Marie Duggan raised £600 Anne Arnold raised £235 Alison Naylor & Dylan Hibbert raised £775 Our Royal Parks Half Marathon runners raised £3,470!
Walk For Wards What a difference Walk for Wards has made so far! A fabulous £7,395 was raised at Walk for Wards in 2016, funding everything from art projects to Christmas presents for service users! Adam Drage, Team Lead for the Mid Sussex Assessment and Treatment Centre and his team of ten colleagues and two dogs raised a whopping £1,157.50 at Walk for Wards! Heads On were then able to match this with a generous donation of £2,500 from the Cuckfield & Lindfield Rotary Club which has now supported a complete revamp of the waiting area at Linwood in Haywards Heath. Said Adam, “Walk for Wards was a really lovely day and a great bonding session for us all to do something together outside work. One of my team came first in the 10k! Thanks to Walk for Wards and our local Rotary Club our waiting area is now far more welcoming, warm and inviting for service users.”
Contact Details Title:
We provide you with a fundraising pack, T-shirt, medal and refreshments at the finish line! And if you can‘t make it to Glynde – don’t fret – why not organise your own Walk for Wards, local to you? What are you waiting for? Sign up online now at www.headsoncharity.org/walk or complete and return the form below.
Payment Details Entry is £10 per adult, £5 per child and £25 for a family (2 adults, 2 children under 16).
I have enclosed a cheque made payable to Heads On for
DOB: If aged under 16, name of the accompanying adult:
£ Please debit my credit/debit card for £
Name on card:
Email Address: Mobile Tel:
Event Details Ward or Service that you are raising money for (if you don’t have a specific one in mind, just put General): If you are fundraising for a special reason and are happy to share your story to help us publicise Walk for Wards, please tick the box below: Yes I am happy to share my story: Route you will take: 5k Will you: Walk
Walk for Wards, Glynde Estates Saturday 20 May 2017 10.30am Put on your walking boots or don your trainers for our fourth fun family day out - Walk for Wards – every penny you raise will go to the mental health ward or service that means the most to you! Walk jog or run 5k or 10k through the beautiful grounds of Glynde Estates by kind permission of Viscount Hampden.
Child T-shirt size: XS
(last 3 digits on back of card)
Postcode & house no/name of address card is registered to: We will be taking photos at Walk for Wards to promote the event and publicise Heads On. Please tick if you are happy for your photos to be used in this way: Yes I’m happy for my photos to be used for publicity purposes Please tick here if you would like to be kept up to date with Heads On news, including information about future fundraising events and appeals and the projects that we support.
Adult T-shirt size: S
How did you hear about Walk for Wards?
Signature: Date: All the sponsorship you raise will go directly to the ward or service of your choice. Your entry fee covers all expenses and is non-refundable.
Please return this form to: Heads On, Swandean, Arundel Road, Worthing, BN13 3EP
“We’ve got mo e to do” In December the Care Quality Commission (CQC) announced they rated us as an organisation which ‘requires improvement’. The organisation, which is the regulator of all health and social care services, inspected our services in September 2016. The number of individual areas where our services have been assessed as ‘good’ has increased since the CQC’s last visit in January 2015 from 32 to 39. During their inspection the CQC spoke with more than 250 people who use our services or who care for someone who does. Most of the feedback was positive and staff were described as friendly, committed, caring and respectful. Our forensic service has been rated ‘outstanding’ for effective, and our child and adolescent inpatient services have been rated ‘outstanding’ for caring. The CQC also noted improvements across the board since their last visit within learning disability and rehab services. There are also areas of our work where we need to up our game. It’s within our gift to do this; not in order to get a better rating from the CQC, but to ensure our services are safe, effective, caring, responsive and well-led. We are working hard to make sure we continue to improve the care we offer to our patients and their carers and families so we can provide outstanding care and treatment you can be confident in. To read the full report see www.cqc.org.uk/provider/RX2
Copyright © 2017 Sussex Partnership NHS Foundation Trust Published by the Communications team. All information correct at time of printing
This document is available in alternative formats upon request, such as large print, electronically or another language. Please contact: 0300 304 0664
Matters What do you think?
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