Ark Magazine: Vol 1

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ARK VOL.1

The Voice of Healthcare

In this issue A SENSE OF CONTROL HOME ALONE ON THE FRONT LINE OF PALLIATIVE CARE PLAN FOR DEATH LIKE YOU PLAN FOR LIFE COMING HOME

Caring for people is at the heart of everything we do POWERED BY


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a sense of Control by Geraldine Bedell

Editor, Rachel McClelland and her grandmother who turned 90 earlier this year.

A SHARED VISION

I must admit that when we decided the first issue of the magazine would focus on palliative care, I was a little apprehensive.

I, like many others, am scared of dying. There’s a bizarre sense that if we talk about it, we tempt fate. Crazy I know, because what’s actually needed is communication. Open conversation at every level - between patients and their families, patients and healthcare professionals. Over the last few months, my team and I have spent significant time researching and talking to a range of healthcare professionals, key opinion leaders and patients and their families, all of whom belong to the palliative care category. We have been met with genuine passion and warmth and it’s become apparent that there is a shared and very powerful vision; patients throughout the nation must have the right to choose how and when they receive their care, and healthcare organisations, GPs and charities must unite to ensure that a simple system can achieve this. This first issue of the magazine has certainly impacted my life, instigating a conversation with family to ensure that my wishes are known. I hope that you enjoy the collection of articles and interviews; there are some important messages and thought provoking stories in the pages that follow. Rachel McClelland.

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My 85 year-old mother recently had a letter from the local NHS Trust asking her to detail what would be important to her in any future care. Great, we thought: the NHS seems to be interested in quality of life rather than simply in prolonging it. (My mum has always been adamantly against being kept alive, as she would put it, ‘for the sake of it.’)

In his bestselling new book, Being Mortal, the surgeon and New York writer Atul Gawande argues that when people have a sense of control over the end of their lives, their last years, months and weeks are more fulfilled. Autonomy, the feeling of being the author of your own life, continues to matter to the old and the dying. And when Gawande has to make medical decisions – whether to operate, for instance – it’s much easier if he knows what matters to his patient. If she feels that life will only be worth living if she can continue to use email, or his main concern is being able to carry on watching sport, it’s easier to weigh up the benefits of intervening against the likely side-effects.

When it came to the questions about what would happen if she could no longer live independently, she was violently and implacably opposed to living with us. As for residential care, she said if she couldn’t live in her flat, she’d rather die. She doesn’t altogether accept her diagnosis; but the fact is, the chances that she will need care at some point are extremely high.

So I was pleased that my mother was being asked to outline her preferences now, while she could. Unfortunately, all the NHS can capture is a snapshot of what she thinks at the moment. My mother has been diagnosed with dementia. What if, as her condition progresses, she changes her mind? And if she does, how will she tell us?

Those who care for people with dementia often argue that even as memory, thinking and reasoning may be eroded, ‘personhood,’ doesn’t change. You are still you. So when my mum can no longer speak for herself, do we assume that the opinions she held for a lifetime, before parts of her brain stopped transmitting, still hold?


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when people have a sense of control over the end of their lives, their last years, months and weeks are more fulfilled

perhaps because music can be experienced in the moment (already, my mum can’t follow an entire play in the theatre but she will happily listen to a symphony). Something that doesn’t figure much now could come to be a reason for living. I’m not sure we can. People change their minds all the time. It’s often observed that the closer people get to death, the more tenacious of life they become. Accepting that my mother is a person now and will be a person in two years’ time doesn’t mean that all her views are going to be exactly the same through that period. And even if she would rather die than go into residential care, we aren’t going to be in a position to kill her, even if we wanted to (which we don’t). There are all sorts of things that might change. I don’t think that listening to or playing music appears anywhere on the form she’s filled out, but music often becomes a lifeline for people with dementia. Musical responses persist,

As the histories, beliefs and sense of accomplishments that make up our identity erode, we are forced back into finding a sense of self in our shared humanity. The humane approach to caring for someone with dementia is to focus on what a person with Alzheimer’s can do, what their life history has been and the importance of their relationships, past and present; and on how all those things can contribute to having a good day now. So, on balance, I am pleased that my mother is being asked to articulate these things now, while she can. But I can’t help feeling that she is receding from me down a long dark tunnel and at some point – in a year’s time, or five – she may still feel strongly what she wants from her care, but she won’t be able to tell me.


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HOME ALONE The good news is we’re all living longer. The bad news is nobody seems quite sure how Britain’s health and social care infrastructure will cope with the far-reaching consequences of this increased longevity. by Pat Hagan

At Marie Curie, Chief Executive Dr Jane Collins has been spearheading changes that are taking the organisation beyond the confines of its traditional role in palliative care.

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arie Curie now recognises that it’s not just the clinical needs of the terminally ill that require servicing but the psychological strain of being ‘home alone’ while facing illness.

VOLUNTEER SCHEME

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‘In recent years, we have recognised that people who perhaps live on their own and are approaching the end of their life are often very socially isolated,’ says Dr Collins. ‘There has been quite a lot about this in the press lately, particularly about men, so we have devised a volunteer scheme called Helper Volunteers, where a volunteer goes into somebody’s home for up to three hours a week. Their role is to provide emotional and practical support. But it mainly centres around emotional support for people who are rather isolated.

Dr Collins describes Marie Curie as a ‘roll your sleeves up’ type of operation. Its core activity is providing nursing care in people’s homes. But while the obvious focus is the person who is terminally ill, it’s the families of those affected, she says, who probably glean the greatest benefit. ‘Often it may be that the husband or wife is able to get a good night’s rest knowing their loved one’s got with them someone who’s very experienced in caring for those approaching the end of their life. The family is as important to the way we work as the person who needs the care. We know the two most important things for people approaching death is pain control and having family and friends around.’

But she has a problem with the term ‘end of life’, or at least the way most people perceive it. Understandably, the image that springs to mind for most of us is of someone struggling for breath as they enter their final hours and minutes.

PRECIOUS TIME

In fact,there is good evidence that end of life can be prolonged by encouraging the right lifestyle. Exercise, for example, can boost strength and buy precious time. ‘Thinking about a rehabilitation programme might sound odd in the context of terminal illness but it isn’t odd at all. People who are losing weight because they have got a terminal illness may get into a vicious cycle where they don’t get out and they don’t get any exercise so they get weaker.’


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Often it may be that the husband or wife is able to get a good night’s rest knowing their loved one’s got with them someone who’s very experienced in caring for those approaching the end of their life

Dr Jane Collins (left)

‘What we want is for people to have as good a life as they can, until they have their last breath.’ She points to the positive effects on lifespan from the terminally ill continuing to pursue their favourite hobbies. ‘For example, we are one of the beneficiaries of the National Gardening Scheme. There’s good evidence that the benefits of seeing living things and being out in the fresh air can be a boost. Even being able to look out of the window and see trees can provide a benefit.’

STARTING OUT

Dr Collins’ passion for palliative care stems, ironically, not from years of working with those nearing the end of life but those just starting out in it. A paediatrician by ‘trade’, she worked as a consultant paediatric neurologist at Guys Hospital in London and then at Great Ormond Street Hospital, before serving an 11-year stint as the latter’s Chief Executive. ‘I felt it was time for a change and I have always been really interested in palliative care. As a neurologist I looked after children for whom there were limited treatment options and recognised the devastating impact that had on families, particularly if their child died.

‘I had a longstanding interest in palliative care for children and so when I was thinking ‘what am I going to do now’ and saw the job (Marie Curie Chief Executive) advertised, I felt that it was a very natural move’. But she’s under no illusions at the size of the task she faces if the terminally ill and their families are to get the support they need as they face death together. Dr Collins recognises that the lone voice of a single charity – however high profile – wields less clout than the collective force of interested parties working in unison. Together with a number of other charities and educational organisations (including the Cicely Saunders Institute at Kings College), Marie Curie has compiled a hit list of topics that should get politicians’ attention in the run-up to next year’s general election. She says: ‘One of the most important things for people is getting access to social care. We know from a variety of different pieces of work that have been done by us and by others that one of the reasons why people who want to die at home aren’t able to and get admitted to hospital instead is a lack of social care. That’s not to say some people don’t need to die in hospital rather than home. ‘But many don’t. Social care is more complicated than health care

Social isolation and an ageing population means a changing role for some traditional palliative care services, says Dr Jane Collins, Chief Executive of Marie Curie.

because it’s means tested and so one of the main things we’re asking for is free social care in the last three months of life. Obviously, it’s quite tricky to define when your last three months are, but it’s at least something which people can start to get their heads round. Local authorities and their partners who are providing social care will have to understand that some people might not survive three months and some people might survive longer. This is one of the things that we are very much promoting. It already has some political traction but we’d like it to have more. We will keep talking about it and one of the advantages of working in partnership is we have a louder voice collectively than we do separately.’

THE IMPACT

But why does a good death even matter? Dr Collins says, ‘it’s not only about the person who is dying but the impact on those they leave behind. In short, people remember the bad times as much, if not more, than the good. I meet people and tell them I’m the Chief Executive of Marie Curie and they will often recount their experiences of somebody they’ve loved who’s died. It could have been very recent, or it might have been 20 years ago. But there’s something enduring about the experience for those left behind. If their loved one didn’t have what they wanted, their pain wasn’t managed or they just were not listened to, that stays with people in a way that is not helpful to them. What should we be aiming for? For everybody to feel that a death was as good as it can be. That might sound funny. But it is what we all want for each other.’


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ON THE FRONT LINE OF PALLIATIVE CARE Gayle Hemstock began her career in medicine and respiratory, working her way up from a staff nurse to a senior sister ward manager. A passion for palliative care led her to undertaking a degree in palliation and ultimately to her current post as a Specialist Sister Palliative care.

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From a nursing perspective, what are the greatest challenges?

It’s sometimes difficult for people to really understand what palliation is and what the palliative care teams actually do, and that can include clinicians too. Sometimes we find that doctors and nurses refer someone who is newly diagnosed, upset or in pain before they have tried to reassure the patient and given them paracetamol or cocodamol to ease their suffering.

Are there any other challenges that affect your team?

What is it about palliative care that interests you?

It’s the fact that we can make a difference to a really awful situation, whether it be a complex physical problem or offering emotional support.

Do most people know what palliation is?

No, I don’t think the general public knows what the word palliation means. That’s why sometimes I say ‘Hi, I am a Macmillan nurse’ because the majority of people have heard of Macmillan rather than palliation. I have to be careful though - I can’t say ‘Hi I am Macmillan nurse’ to a patient with a non-malignant disease because I might frighten them into thinking they have cancer on top of their diagnosed condition.

What are the highlights of your work?

There’s probably not a day that goes by that I don’t think “I’m sure I made a bit of a difference there”. That’s enough for me, because if I can go to a patient who is in awful pain, and the next day or the day after that they’re pain free, then that’s brilliant. There’s huge job satisfaction in that. It’s also nice to be able to give psychological support: we just talk through whatever is worrying them and they get some sort of benefit from it. It sounds really clichéd but I love this job I’ll probably be doing it forever.

What’s the hardest part of your job?

That’s a difficult one because all of it’s hard. We just get used to it.

Are there any special techniques used in dealing with patients and their families in palliative care?

We could do with more community support - there is a definite lack of nurses and Macmillan nurses around at the moment. Our role is to see anybody with anything that is going to end their life and to provide them with whatever they need at that time. And it’s not just about cancer. People with a COPD or heart failure also need our support, whether they’re in hospital or in the community, so we have to make sure that their needs are being met too.

Where do palliation nurses go for support?

We are pretty good at supporting each other as a team. When we have time, we have We all do advanced an informal chat at communication skills, the end of the day, The patients which definitely just to go that we see could have helps, mainly through the anything, it could be a because patients patients and and families tend gynaecological problem, it talk it down. to be distressed. It’s easier then could be respiratory, it could We try to get the to go home be orthopaedic and so on. So most out of and become you’ve got to have a broad conversations the wife or using key knowledge base and been daughter that statements really qualified for several we are outside just to try and get to of our jobs. This years to get by. the nitty gritty of what works well in our the problem might be. I team because we think a lot of it comes with are all in the same boat experience really, most of us have and we all understand the been around long enough just to know how patients that we are seeing. to communicate.

Is there anything that is particularly upsetting or stressful about your work?

If we can relate to the patients we’re supporting because of similarities with our own families then it can really hit home. So we have to try and protect each other if there is a case like that - usually somebody else will go so that it’s not quite so challenging.

What advice would you give to nurses who want to move into this area?

I would tell them to get a few years experience under their belts first. The patients that we see could have anything, it could be a gynaecological problem, it could be respiratory, it could be orthopaedic and so on. So you’ve got to have a broad knowledge base and been qualified for several years to get by.


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THE ART OF BREAKING BAD NEWS

Breaking bad news is one of the hardest tasks in medicine, requiring a delicate balance of honesty and sensitivity. So what’s Professor Lakhani’s formula? We have special training in this and have trained a lot of GPs. First we make sure the room is well set out and there are no interruptions – so phones are switched off. We check what the family of the person knows already, for sometimes they do suspect what’s coming. Then you start with very gentle opening questions around ‘I see you’ve come to discuss a letter from the Consultant today. What do you know already so far, or how did you feel when the Consultant told you about what’s wrong with you?’. Once you’ve established what insight the patient has, then say something of a warning shot, along the lines of ‘when I saw the letter, I got concerned because it wasn’t the news I wanted to read, Mrs Smith. As your doctor I was hoping for more positive news…’. That just prepares them a little and then you pause to let it sink in. It may take two or three meetings but I think it’s very important to be honest with people and to ask what’s worrying them. The top three concerns of people who are dying are dying alone, being a burden to the family and having pain. So we reassure them about the services available. People get scared but planning ahead is really important, so they can say goodbye, say ‘I love you’ and do things they want to do. Some people don’t want to know and we must respect that as well. As for us doctors, it’s important that it doesn’t become just a routine or a task. I think it does affect you and that helps you give good care. Showing a bit of yourself to the patient can be very good. But doctors also have to take care of themselves because over involvement can contribute to burnout. Professor Lakhani is chair of the coalition group Dying Matters and also chairs the National Council for Palliative Care. When not working as a practising GP, he also serves as chairman of NHS West Leicestershire CCG.

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PLAN FOR DEATH LIKE YOU PLAN FOR LIFE It’s not an easy message. But planning for death is something we must all learn to do, says Professor Mayur Lakhani, who believes the NHS needs many more GPs to provide good palliative care. by Pat Hagan

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here’s no doubting Professor Mayur Lakhani’s professional credentials when it comes to spearheading change in the provision of palliative care and there’s also no question that he has the personal experiences to match them.

Sadly, Professor Lakhani watched both his parents die from cancer at a time when palliative was very much a fringe service, from which only a small minority of patients ever benefitted. ‘When my father died in 1989 there wasn’t really that much palliative care available. Ten years ago, when my mother also died from cancer, things had improved a good bit. I remember the Macmillan Nurse came to see her and she put the syringe driver up and gave her the pain relief she needed. I thought to myself ‘that is absolutely fantastic’, but in the end my mother died in hospital. And as a family doctor, I know a great many people are dying but are not recognised as dying, so they don’t get palliative care. So I decided that I would do something about it and I became chairman of the National Council for Palliative Care.’

DYING MATTERS

The NCPC is the umbrella charity for all those involved in palliative, end of life and hospice care in England, Wales and Northern Ireland. It was set up by the late Dame Cicely Saunders, widely regarded as the founder of the modern hospice movement, and campaigns for everyone nearing the end of life to have access to the highest quality care and support, ‘wherever they live and whatever their condition’.

As chair, Professor Lakhani also plays a pivotal role in Dying Matters, a coalition of 30,000 members across England and Wales which aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life. Membership includes everyone

from hospices, care homes and GPs to funeral directors, lawyers and faith groups. ‘The objective of Dying Matters is to have a great national conversation about death and dying and to get, in effect, advance care planning. It hurts me that so many people don’t get the care that they need. It’s estimated that 92,000 people a year in England alone don’t get palliative care, so they either die in hospital or at home with uncontrolled symptoms. We need to change that. Thankfully, things are changing in the wake of the 2008 National End of Life Care Strategy. More people are being allowed to die at home and things are moving in the right direction.


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But Professor Lakhani’s personal target is to get more GPs to identify – in advance – patients who are dying in time to help them draw up a proper care plan. ‘Let’s say you’re 55 or over. Just think ahead to who’s going to make your decisions, or what would happen if you developed a serious illness like cancer or a serious heart disease? The best advice is to think ahead. Talk to your doctor, tell other people about your decisions. In effect, plan for your death like you plan for birth. It’s a difficult thing to talk about and I don’t underestimate the difficulties. I know a lot of my colleagues find it hard to discuss. It’s scary to tell someone that their life is coming to an end.’

MORE TIME

But there’s a method to breaking bad news (see boxed article). Death is an inevitable part of living but it’s possible to die well with early identification and good services. The major obstacle at the moment isn’t a lack of enthusiasm as much as a lack of manpower. Planning advanced palliative care means GPs must allocate patients more time – the one thing they do not have much of. Professor Lakhani says: ‘The number one challenge is we haven’t got enough GPs. We are 10,000 GPs short in this country so that means people are not identified for palliative care as they should be. ‘It is hard to get good roundthe-clock care for patients in the community and that’s why they end up in hospital. We are struggling with workforce and the workload is rising. We need more GPs, that’s a definite, and I think we need more resources in the shape of bigger primary care teams and more community nurses’.

Professor Lakhani

Constant NHS reform is often blamed for a lack of continuity in services. But Professor Lakhani believes the emergence of Clinical Commissioning Groups has been a ‘very positive development’. For the first time in more than a decade, I have seen my Primary Care Organisation really majoring on end of life care and the other two CCGs I work with are doing exactly the same.

A LONG WAY TO GO

There is a long way to go and not everyone is doing all that they can. But he has a

clear message for other CCGs which have yet to prioritise palliative care in the way it deserves. ‘Make the most of your powers. You have the budgets and the authority. Don’t let providers come and tell you ‘this is what we need’. Make the most of your clinical leaders, the GPs, by asking them what’s working well and what isn’t.’ The ideal palliative care model, he says, would be community based teams organised around federations. A federation of 30,000 to 90,000 population might have its own palliative care nurses and geriatricians. It would set a framework, ensure standards and slash bureaucracy. ‘My message to the government and decision-makers is simple - make end of life care a priority. How we care for people who are dying is a litmus test for our society.’

“It hurts me that so many people don’t get the care that they need. It’s estimated that 92,000 people a year in England alone don’t get palliative care, so they either die in hospital or at home with uncontrolled symptoms. We need to change that”


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COMING HOME Brian Andrews, Chair of the Lay Representatives Board of the Pan London End of Life Alliance experienced at firsthand what can happen when palliative care doesn’t quite get it right. In his heartbreaking story, Brian describes the trauma of losing his wife amidst a chaotic and ineffective system. by Rachel McClelland

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wenty-First-Century palliative care should, I’m sure we all agree, focus primarily on the patient. Unfortunately all too often, budgetary constraints, bureaucracy and conflicting strategies inhibit the application of care, leading to tragic situations escalating further. The NHS has, in recent years, been working with a number of key organisations as part of their remit to improve palliative care. Their involvement in projects like the Pan London End of Life Alliance has begun to address issues and encourage people to talk about their needs and wishes.

“In 2009, my wife had a lumpectomy and the start of treatment for breast cancer. She had a torrid time with chemotherapy and radiotherapy but after 13 months was given the all clear and told she didn’t have to return to the hospital for a year. We celebrated by taking my grandsons on holiday and it was just as well because within three months my wife was dead.” Brian’s wife, Gill, had developed a rare form of leukaemia as a side effect of the chemotherapy. She was given eight weeks to live. The cancer was so aggressive that she died just 26 days later. When the news was delivered, Brian was in complete denial, ‘like a rabbit in the headlights’ and that was the start of a challenging and devastating journey.

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Gill had expressed her wish to die at home, a seemingly simple last request, however, it took seven days for them to ‘escape’, as Brian terms it, from the hospital system. Despite not needing or wanting financial assistance, somebody had applied on their behalf and that cost Gill and Brian seven days of their final 26 together. Much to Brian and the family’s relief, Gill was finally able to return home; “Gill’s arriving home was a turning point. The contrast between the NHS and palliative care was huge. The nurses were fantastic. After five days I sacked the domestic care; who we’d ironically got as a result of the funding. The head carer was more interested in her timesheets than anything else and when another carer arrived, she told us that Gillian wasn’t going to die because we were all going to pray together and sweet Jesus was going to save her. I’m a man of faith but….”


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Six days before Gill died, the couple received a visit from the head of nursing at St Christopher’s. They were told that because of Gill’s condition there was a strong possibility that she could die at any moment from a massive haemorrage. Brian asked what he should do if he were to be alone when that happens. The nurse replied, ‘cuddle her, tell her you love her’, it would only take a couple of minutes. She advised him to have dark towels, ideally red or brown, to mitigate the visible image of what might happen in that event. Whilst shocking, the emotional support and the practical advice was exactly what Brian needed and it made a huge difference.

“We experienced seamless continuity except on one occasion; six days before Gill died, she was in so much pain in the middle of the night. As a last resort I called the emergency doctor. A couple of hours later the emergency doctor arrived. There was an initial problem because his English wasn’t perfect but more importantly he didn’t have a clue about Gill’s condition. He didn’t want to give her medication, he wanted to send her back to hospital! We had ‘do not resuscitate’ notices all over the flat and she was in significant pain and he refused to give her any medication - I had to physically stop him from leaving the flat until he did so. I’m not proud of that but I was desperate.” Although Gill finally made it home, largely due to Brian’s persistence, there were significant flaws at every stage of the journey. Brian recognizes that there are many dedicated and professional carers and nursing teams across the UK and that

Gill’s arriving home was a turning point. The contrast between the NHS and palliative care was huge. The nurses were fantastic

the problems arise from an ineffective system and bureaucracy. He believes that what is needed is a ‘One Stop Shop’, one dedicated individual who can access a patient’s total case history as well as one telephone number, rather than the thirteen that he had, that family members can use for immediate assistance and support. Although still traumatised by his experience and the untimely loss of his wife, Brian has channeled his grief and tirelessly campaigns to raise awareness in bid to change the system to ensure that people’s dying wishes are granted and that their families don’t suffer unnecessarily.


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NPSA ALERT

Ambulatory Syringe Devices The Voice of Healthcare

In December 2010, the National Patient Safety Agency (NPSA) issued a Rapid Response Report (RRR), regarding the use of ambulatory syringe drivers. The purpose was to call upon healthcare organisations to develop a purchasing for safety initiative for procurement of safer ambulatory syringe drivers with a view to addressing a number of reported safety issues with older devices. The actions in the RRR were to be completed by 16 December 2011 with all devices currently in use replaced by December 2015. The majority of syringe drivers and pumps used in healthcare have rate settings in millilitres (ml) per hour, however, some older types of ambulatory syringe drivers have rate settings in millimetres (mm) of syringe plunger travel per hour (or 24 hour).

This is not always the most effective and easiest system for users. Inaccurate measurement of fluid length or incorrect rate setting of the device can result in errors.

EVIDENCE OF HARM

Between 1 January 2005 and 30 June 2010 there were eight deaths and 167 non-fatal reports involving ambulatory syringe drivers. Four of the deaths were reported in 2009. Many of these incidents described infusions that had either run through much quicker than expected or had not infused at all.

CURRENT SITUATION

Almost four years on from the publication of the RRR around 75% of the older devices have been successfully replaced with CME Medical’s T34, which complies fully with all

recommendations made in the report and current safety standards. Although possible training issues were stated as a consideration in the RRR comprehensive training and support packages have ensured the transition has been straightforward and successful. The RRR and supporting information is available at:

www.nrls.npsa.nhs.uk/resources/type/ alerts

GUIDANCE & ADVICE

Any organisations that have not yet made the transition can seek further information and advice by contacting 01253 206700.

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