August 2012Theme: Care homes

National Update

Claire HenryNational ProgrammeDirector

August 2012

National Update

News

FeaturesCAre Homes

The end of life care challenge for care homes

What families think of end of life care services

meeting the needs of people with advanced dementia

Case studies: ABC, ACP and the six steps programme:

east of england•

Plymouth•

suffolk•

West sussex•

The PPC challenge: support and awareness

Focus on Wales: Why dying well is a top priority in Wales

How a seven-day-a-week •service is transforming care

How patient and carer •feedback boosts hospice care

News in Brief

IN thIs IssUe:A roundup of what’s happening at the National end of Life Care Programme

Newsletter

Welcome to Rick – our new Joint social Care Lead

We are delighted to announce that rick o’Brien will be joining the Programme as Joint social Care lead later this month.

rick is currently a senior man-ager in adult social care based at Wirral Council. After practis-ing as a generic social worker he has held a range of man-agement positions in social care and worked extensively with health on delivering integrated models of working across health and social care.

In 2009 rick became national lead for end of life social care with the Association of Direc-tors of Adult social services (ADAss). He has worked with the Department of Health end of life care team as well as national regional and local networks to support improve-ments in end of life care and help implement the Supporting people to live and die well social care framework.

specialist peer review

The National Cancer Action Team has set up a working group to review the concerns expressed by stakeholders about the forthcoming peer review of specialist palliative care services.

The working group, which includes representation from the NeoLCP, hopes to be able to sup-port organisations in establishing agreedconfigurationsoftheirservices and getting the process

of self-assessment under way.

In the meantime, says Na-tional Programme Director ruth Bridgeman, it is important to continue to plan to undertake self-assessment of services for this year. In light of the con-cerns it has been agreed that self-assessment will not be made public and will not require internal validation, she says. The deadline for completion of the self-assessment has also been extended to February 2013.

Diabetes strategy

Diabetes UK has produced a new strategy for diabetes and end of life care. End of Life Diabetes Care aims to outline a consistent but high-quality approach towards end of life care for people with diabetes by providing a series of clinical care recommendations.

The guidance also includes downloadable supplemen-tary information, including algorithms. Information sheets relating to staff competences and a short guide for healthcare professionals relating to sick day rules are included in the clinical care recommendations.

ePaCCs network

NHs Networks has set up a support site aimed at helping those involved in commission-ing and implementing ePaCCs (electronic Palliative Care Co-ordination systems).

The site, which includes a blog and links to related sites, seeks to share information and guidance that will be relevant to those involvedinthisfield.Tosignup,firstregisterforNHs Networks then visit the ePaCCs site.

NCPC’s new toolkit

The NCPC has launched a new toolkit to empower local people to push for the right end of life care services.

What about end of life care? is a practical toolkit designed to help the public and professionals understand the new health and care structures and develop the relationships required to secure high quality end of life care. It contains a series of action sheets aimed at decision-makers such as clinical commissioning groups aswellasthosewhoinfluencethose decisions. Action sheets for other key players, including health and wellbeing boards and education and training providers, will be released later this year.

A hardcopy of the toolkit is available to download. There is also a site for feedback. For extra copies contact NCPC at publications@ncpc.org.uk or call 020 7697 1520.

Conditions networks

The NHs Commissioning Board Authority has set out its plans for a small number of national networks to improve health servicesforspecificpatientgroups or conditions. For full details see The Way Forward – strategic clinical networks.

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A palliative care nurse in Camden has been awarded the Welch Al-lyn UK Pioneers of Care Award for her volunteer work in educating the public about dying. susan morris, Pal-liative Care Clinical Nurse specialist at Central and North West London NHs Foundation Trust, won the award for her work within the Natural Death movement.

susan, pictured, has been work-ing for the Natural Death Centre charity, of which she is a trustee, for the last 20 years. The charity aims to inform and educate the public about choices available to them and their carers and offers free, impartial advice on all aspects of dying and death, in particular consumer advice on funerals and natural burial grounds.

The award recognises the outstand-ing contribution susan makes through her voluntary work. “It’s such an honour to be given this award which I hope will enable us

to create more healthy discussion about death in our society,” said susan.

“People who are dying are often perceived as a vulnerable group but in palliative care and through

my charity work we work to change that and give people real choices to have honest, informed conversa-tions about death.” susan has donated the £1,500 education bursary, which was part of the award, to the Natural Death Centre charity to help support its work on consumer choice towards the end of life.

specialist palliative care community services are enabling more people to die at home, according to a major new report from the NCPC and the National end of Life Care Intelli-gence Network (NeoLCIN).

Latestfiguresfromthenew2010/11 Minimum Data Set for Specialist Palliative Care Services (MDS) report show that a third of those receiving specialist palliative care in 2010/11 died at home, compared with just

oneinfivenationally.This is the third succes-sive year the propor-tion of deaths at home has increased.

Thereportalsofindsthat nearly half (45%) of the people referred to a specialist palliative care in-patient service are discharged to their home, dispelling the myth that people only go into a hospice to die.

meanwhile the number of people

with non-cancer diagnoses using specialist palliative care services has

more than tripled in the last decade, from 5% in 2000 to 17% last year.

The number of people aged 85 or over being seen by specialist palliative care services has also risen in the last decade, from 11% to 14%, with the biggest increases in hospital support and community teams. However, this age group remains under-represented compared to younger age groups.

While women under 65 were more likely than men to use bereave-ment support after a death (38% compared to 31%), this reversed in the 65-84 age group where 32% of men sought support compared to only 21% of women.

eve richardson, Chief executive of the NCPC, said the growing impact of specialist palliative care services was encouraging but there was still a long way to go. “With over half a million people dying each year it’s essential that end of life care remains a priority against a back-drop of major health and social care reforms and that commissioners ensure that high quality end of life services are available in all settings for all those who need them.”

specialist services enable more people to die at home New local authority profiles for end of life care are released

The National end of Life Care Intelligence Network (NeoLCIN) has publishednewendoflifecareprofilesfor top tier local authorities in england, complementing its end of life care pro-filesforPCTs,releasedearlierthisyear.

Thenewprofiles,whichhavebeenproduced by the south West Public Health observatory on behalf of the NeoLCIN, contain over 50 indica-tors which will help identify and understand variation in end of life care across england.

They will also support the commis-sioning and planning of end of life care services and highlight informa-tion gaps and inadequacies so that data collection on end of life care can be improved.

Theprofilescontainindicatorsthatcan be used to predict need on the basis of population and deaths. They also show current patterns of care according to place of death, cause of death, deaths in hospital and in care homes.Andforthefirsttimetheyin-clude social care indicators covering local authority spend on social care, delayed transfers of care, discharge from hospital for rehabilitation, user experience,carersandbenefits.

The indicators address the National end of Life Care strategy’s require-ment that information should “en-compass both health and social care and wider societal issues”.

There is a comprehensive indicators metadata guide to help users under-stand the strengths and limitations of each of the indicators and to guide interpretation.

TheprofilesareavailableinbothPDFformat (one for each top tier local authority in england) and InstantAtlas format. The PDF snapshot enables easy comparison of the local author-ity’s position compared to england and its current sHA. The interactive InstantAtlas tool makes it easy to com-pare one local authority with another.

Theprofilesarenowavailableonthe NeoLCIN website. For more information please email informa-tion@neolcin.nhs.uk or use the online feedback form.

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Palliative care nurse wins Pioneer of Care Award

A two-year study of the use of the GsF in somerset care homes shows that participants in the scheme increased the number of patients dying in their usual residence and cut hospital admissions at twice the rate of non-GsF care homes.

The two-year somerset public health study followed completion of the GsF quality improvement training programme in 64 homes. It looked at hospital admission reduc-tion in GsF care homes compared with non-GsF homes in the county.

Against a background of reduc-ing admissions, the GsF homes in somerset doubled the reduction of hospital admissions (20.2% GsF homes compared with 10.5% in non-GsF homes), cut hospital deaths by 30% compared with 12%

in non-GsF homes and enabled 87% of care home residents to die in their homes. somerset PCT has since commissioned its third round of GsFCH training.

A similar study in the st Christo-pher’s Hospice area of south east Londonalsoshowsasignificantrisein residents dying in the care home - from 57% to 76%.

Dr Chris Absolon, GP Palliative Care Lead for somerset, said: “While we cannot say that all the improve-ments are solely attributable to the GsF programme, it is clear from the figuresthatithasplayedasignifi-cant part in improving end of life care in somerset care homes.”

meanwhile 42 care homes received their GsF Quality Hallmark Awards last month, bringing the total number of homes to have received the award to almost 350. Laura Akehurst (left), Clinical Care manager, and Gillian Forsyth (right), General manager of Halliwell, in Tunbridge Wells, are pictured receiving their awards from National Clinical Lead Keri Thomas.

Further information from info@gsf-centre.co.uk or see GsFCH evidence summary on the GsF website.

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The Cornwall and Isles of scilly Primary Care Trust and Peninsula Deanery has won the dementia care award at the Nursing Times and Health Service Journal Care Integra-tion Awards for its work in improv-ing end of life care decision-making for people with dementia.

The team, pictured, has developed a new model of care which recognises the support given to the families of people with dementia in planning their last days. ‘Best interest’ meetings involve families and staff, who use a toolkit to work through all aspects of end of life care, best practice, research and information to allow informed decisions to be made.

The initiative has helped prevent inappropriate hospital admissions and increased the number of deaths in the patient’s place of residence. There have been no hospital admis-sions for anyone who has had a ‘best interest’ planning meeting in the 11 homes that have so far adopted the care pathway. It is hoped to roll out the model to many more homes providing dementia care.

“Families really appreciate being involved in developing a care plan for their loved one so that they understand what to expect and know they will be helped to live their last days with dignity,” said Kate mitchell, Joint Dementia Programme manager. Blackpool Teaching Hospitals Foundation Trust won the cancer care award at the same ceremony for its rapid discharge pathway for patients at the end of life.

The pathway helps facilitate a safe, smooth and seamless transition of care from hospital to community for patients at the end of life who wish to die at home. The pathway has led to an increase in patients discharged, a reduction in length of stay and improvements in patient and carer experience.

Lead Cancer Nurse Andrea Doherty said the team was absolutely de-lighted with the award. “This is rec-ognition not only for the pathway but also all the collaborative work behind the scenes,” she said.

Cornwall dementia team win care integration award New documentation for advanced statements in care homes

st Christopher’s Hospice in London has produced two new documents to help care home residents ex-press their wishes and care prefer-ences at the end of life.

Thinking ahead is for those who have capacity to make decisions and allows people to make an ad-vanced statement recording their wishes and preferences.

Looking ahead aims to help care home staff open up discussions with families about the end of life care needs of residents with dementia. It emphasises the importance of involving residents wherever possible. It is not a legal document but can be used to inform a future best interest meeting.

Both documents include sections on lasting powers of attorney and advance decisions to refuse treatment as well as a series of questions about people’s wishes, including spiritual and religious needs. There is also space for further reviews as well as an expla-nation of the terminology.

The documents can be downloaded from st Christopher’s website. Printed documents can be bought in batches of 50 or 100 copies. For more information email d.brady@stchristophers.org.uk.

New study reveals impact of GSF in Somerset’s care homes

The care home sector is a challenging area for end of life care. Although there is much good practice the overall picture remains varied.

ThelatestfiguresfromtheCareQualityCommissionshow there are over 460,000 residents living in 17,740 nursing and residential homes across england.

All the evidence indicates that most would like to remain in their care home – which is their usual place of residence – until they die. But although there has been an encouraging growth in recent years in the numbers dying in care homes rather than hospital, there is still considerable room for improvement.

Latest statistics indicate, for instance, that 18% of people died in care homes between 2008-10 – com-pared with 29% of those on the electronic Pallia-tive Care Co-ordination system (ePaCCs) who say they would prefer to die in their care home setting. meanwhile 16% of care home residents are still admitted to hospital within the last week of their life and die there1.

Care homes are often seen as the poor relation when it comes to end of life care training and awareness-raising. The rapid turnover of the workforce combined with heavy workload demands can make it particularly challenging to organise training and embed the learn-ing. And the fact that homes are often isolated from each other, let alone the rest of the health and social care services, only exacerbates the issue.

so what is the current picture? A recent NeoLCP survey of 56 end of life care facilitators, representing 5,693carehomes,showedsignificantincreasesintheimplementation of Gold standard Framework, ad-vance care planning preferred priorities for care and Liverpool Care Pathway between 2010 and 2011. However, a more in-depth survey of 12 of these facilitators, representing 1,768 homes, indicates that the uptake is still quite low. Just over 20% of homes were making use of ACP while use of tools such as GSF,LCP,PPCandlocalapproachesweresignificantlybelow this. even in the nursing home sector, uptake of each of these approaches was below 50%.

This month we focus on care homes – and in particular the challenge of ensuring that residents’ preferences about their place of care and deatharefulfilled.

OurfocusincludesananalysisoftheVOICESsurvey’sfindingsaboutthecurrent state of end of life care in care homes as well as new research about meeting the wishes of those with advanced dementia. We also carry four case studies of good practice which all, in their different ways, underline the critical importance of training, education and sustainability

Yet with the right support and training many care homes have been able to make major strides and offer an excellent level of end of life care to their residents.

education and training of the workforce is clearly key to this. The NeoLCP’s route to success for care homes, which follows the six steps of the end of life care pathway laid out in the 2008 strategy and includes practical advice and information, has been instrumental in spreading the message. As one respondent put it: “I tell care homes if you use the rts you won’t go far wrong! They are easy to digest [and] don’t set things too high, which could lead un-qualifiedstaff[tothink]thisdoesnotrelatetothem.”

end of life care home co-ordinators in the North West of england have now taken that process a stage further and developed a workshop-style training programmespecificallyforcarehomes.

The North West’s end of life care facilitators are cur-rently implementing this programme within more than 800 care homes in the area. As a nationally available resource it is also being taken up by many other locali-ties. Kent, for example, has introduced the scheme in 18 care homes in the maidstone area and has plans to roll it out to the remaining 40 or so homes.

Under the scheme, a representative from each of the care homes signs up to attend all eight of the work-shops. Following completion they are expected to become end of life care champions in their care home and cascade the learning from the workshops to other staff. Another example of this roll-out is happening in Plymouth, featured in our case studies of good practice.

other areas are focusing on making advance care plan-ning a routine aspect of care within targeted care homes.

The key to success seems to be to view individual initia-tives as part of a wider process and follow up any formal course work with support and training in the workplace. It is also crucial to have the support of the care home manager and to have people working on the ground as end of life care champions, ensuring the individual is always at the centre of the care planning process.

A new NeoLCP survey shows that end of life care appears to be improving in many care homes – but there is still a long way to go. And one of the keys is going to be the education and training of staff

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The end of life care challenge for care homes

Care homes

ReFeReNCe

What we know now that 1. we didn’t know a year ago: New intelligence on end of life care in England. NeoL-CIN, may 2012.

The VoICes survey of bereaved people’s views about end of life care services has produced per-haps the most comprehensive insight yet into the quality of those services and how they are experi-enced by users.

The light it shines on end of life care in the care home sector is particularly fascinating. In many respects the findingswereheartening.Mostrespondentssaidthequality of care had been excellent or outstanding and the overall scores were very similar to other sectors.

most also said that their loved one’s pain had been relieved completely most or all of the time (though over a quarter said it had not been relieved or only partially) and a large majority praised the care and support they received in the last two days of life.

eighty six percent of care home respondents felt the patient had been involved as much as they wanted – similar to other sectors. And interest-ingly, it seems that care home residents are more likely than other groups to have been told they were going to die in a sensitive manner. older people – those aged 80 or over – were the most likely to have been given this news sensitively.

Butwhilethesefindingsshowcare homes in a favourable light in relation to other

sectors, especially in their treatment of more elderly residents,otherfindingsgivemorecauseforconcern

so, for instance, only 61% of respondents felt their loved one had been treated with dignity and respect all of the time (compared to ratings of 72% to 80% for community nurses, GPs, hospice doctors and hos-pice nurses) and those under the age of 65 seemed to be treated with more respect than older groups. People with cancer also tended to be treated with greater respect than other groups.

The survey also shows that care home residents were the least likely of different care groups to have ex-pressed a preference about where they wished to die –35%comparedtoanoverallfigureof44%,61%in hospices and 67% in people’s homes. only 41% of those aged 80 or over – in other words, those disproportionately represented in care homes – had indicated where they wished to die.

Oneinfiverespondentsfeltcarehomeresidentswere not given enough choice about where to die

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most carers felt their loved one had been involved in their care as much as they wanted

– although this was a marginally smaller proportion than the overall average. However, 88% - more than in most other care sectors – felt that in the end the patient had died in the right place.

Carers of people in care homes were generally less satisfiedthanmostothersectorswiththesupportthey received in the last three months. Under half (46%)saidtheyhadreceivedsufficientsupportcom-pared to 56% of home carers and 66% in hospices. Oneinfivesaidtheyhadtriedtogetsupportwithoutsuccess while 11% said they hadn’t asked for any.

At the same time care home respondents were slightly more likely than average to say they had been able to discuss their worries and fears with their GP, to be involved in decisions about an indi-vidual’s care as much as they wanted and to feel that the support they received at the time of death was adequate.

All but 4% felt they were dealt with sensitively after the individual’s death and while fewer care home respondents than any other group had talked to pro-fessionals afterwards, more than other groups said they did not require any professional help.

Interestingly, care home residents with dementia tended to be treated with greater respect and dig-nity than other care home groups. And carers rated the care their loved ones received more highly than other groups.

People were less impressed with co-ordination between care homes and community services. While 35%ofrespondentssaidthishaddefinitelyhap-pened, 18% said it had not and 48% said it had only happened “to some extent”. Co-ordination between hospital services and GPs and other services outside hospital was even less evident. Here more people felt the services had not worked well together than those who did. And the largest proportion (38%) said it had only worked well “to some extent”.

NeoLCP Programme Director Claire Henry feels there is much to build on in the report. “Although this shows there is plenty of good practice around the country, it does highlight concerns – for instance, about dignity and respect and the fact that so few residents seem to have had the chance to express a preference about where they wished to die.

“It’s great that despite this, most respondents felt their loved one had died in the right place. But until we have those conversations with the residents them-selves how do we know?”

she suggested that more work needed to be done on raising awareness about the importance of advance care planning in care homes. Local providers needed to audit what was happening in their area and commissioners should take this into account when planning services.

most respondents to the national VoICes survey were full of praise for the care their loved ones received in care homes attheendoflife.Butsomeotherfindingsraisefurtherquestions.AndrewColereports

What families think of end of life care services

Around 100,000 people with dementia die each year in the UK and the numbers are rising. so it is clear thisgroupmakesupasignificantproportionofthoseneeding end of life care. It also seems likely many will be spending their last days in a care home.

A new briefingpaper by sCIe on recent research on the topic indicates that care home staff face a number of challenges in caring for people with advanced dementia. one of the trickiest, of course, is determining what their wishes and preferences are at a time when they are cognitively impaired.

one care home study showed that although people might say how they wanted to be cared for in complicated and vague ways, it was usually possible to work out what their wishes were – although an-other study indicated some residents were reluctant while others said their plans were sorted out.

But clearly a preferable option is to try to estab-lish the individual’s wishes at an earlier stage. The authors suggest that people should be given the chance to develop or revise their advance care plan when they move into the care home. But sometimes it doesn’t happen, partly because staff think people with dementia are not able to give their opinion and partly because they are reluctant to raise the issue.

even when someone has made a statement of their wishes and preferences it isn’t always followed. Staffmaynotknowaboutthemorhavetheconfi-dence to put them into practice. They may be afraid of legal action if they don’t call an ambulance in an emergency or a family member may insist on send-ing the person to hospital.

Another challenge is determining when someone with advanced dementia is approaching the end of life. one American study, for example, showed that while staff estimated only 1% of people with ad-vanced dementia would die in the next six months, theactualfigurewas71%.

Thebriefingpapersuggeststhatifsomeonewithadvanced dementia has complications such as

weight loss and multiple infections then it is likely they are approaching the end of life. other symp-toms – such as losing consciousness, no longer being able to swallow, terminal restlessness and changing breathing patterns - may indicate that the individual is in their last few days or hours of life.

It is vital that care home staff are alert to these changes but often they lack the training and confidence to deal with them. In particular they say they are not confident about recognising and managing pain, helping people who have eat-ing problems and managing ethical dilemmas. In addition staff may not share the same cultural or religious views as the people they are caring for and may have different ideas about what a “good death” involves.

most training seems to have positive results. evaluations suggest they lead to greater staff satisfaction, a greater willingness to discuss end of life care issues and higher satisfaction among family carers.

staff also need to be aware of the family’s expecta-tions. Families see good end of life care as being about much more than physical care and identify cleanliness, food and nutrition and pain manage-ment as crucial. Perhaps above all, they want to feel that staff have “got to know” their loved one.

As the individual approaches the end of life, family carers are often taking on a dual – and sometimes conflicting–roleofdecision-makerandgrievingrelative. “staff need to understand this and respond to their need for empathy, support, communication and guidance,” say the authors.

It is also important that staff do not automatically ascribe all problems to the individual’s dementia. A recent conference organised by sCIe, Arup and the Thomas Pocklington Trust on dementia and sensory impairment noted that an increasing number of elderly people suffer from co-morbidities and those with dementia are no exception.

more than two thirds of people over 70 have some form of hearing loss and almost half have some symptoms of age-related macular degeneration, for instance. A condition like macular degeneration canleadtomisperceptions,misidentificationsaswell as illusions and hallucinations – but this may be missed in someone with dementia. As one confer-ence participant put it: “The problem is that when someone has dementia everything gets blamed on the dementia.”

There is also an important lesson here for joined up services. Pam Turpin, senior consultant with Arup, said commissioners needed to understand that the majority of older people at the end of life had mul-tiple conditions and that therefore care and support must be integrated.

Caring for people with advanced dementia at the end of life presents a number of particular challenges. New research from sCIe highlights the main issues and suggests ways forward – for staff, residents and carers

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Meeting the needs of people with advanced dementia

People could be given the chance to develop or revise their ACP when they move into a care home

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Carehomestaffproudlyshowofftheircoursecertificates

over the past 20 months NHs east of england has been rolling out a hugely ambitious end of life care training programme for many of its care homes.

The aim of the project, which began in November 2010 andwillfinishbythespringofnextyear,hasbeentogiveat least 2,000 care home staff a grounding in end of life care skills. The project has already exceeded its target.

every member of staff involved in the end of life care ABC programme for care homes is offered a mix of e-learning (developed with epic Ltd) together with face-to-face training and support from a team of 16 end of life care facilitators.

Vanessa Convey, east of england end of Life Care and Palliative Care education and Training Programme manager, says they chose this ‘blended’ approach not only because some homes did not have the necessary IT facilities for e-learning but also because local needs differandsomestaff’sfirstlanguageisnotEnglish.even those who went through the e-learning modules were keen to discuss the issues face-to-face, she adds.

st Luke’s Hospice in Plymouth has been running an adapted version of the six steps programme for the last year. In that time it has supported 91 staff (10 cohorts) representing over 50% of all care homes in the city as well as 10 domiciliary care agencies.

The programme consists of nine workshops focusing on the six steps end of life care pathway, with one devoted specificallytodementiaandendoflifecare.Thepro-gramme, which was part-funded by Help the Hospices Burdett Trust and costs £200, has proved to be very popular. Care homes that take part send two members of staff who become end of life care champions for their organisation and are expected to attend all the sessions.

organisations and individuals go through a rigorous assessment process and then have three months to consolidate their learning following the end of the course. During this time they receive practice visits from the cohort lead. They also have to submit their portfolio to the education lead. If they satisfy the course’s requirements they become accredited with the hospice and this is reviewed each year. Cham-pions are also expected to attend meetings of the end of Life Care Link Forum, which currently has 40 regular members.

on the next two pages we showcase education and training initiatives in Plymouth, east of england, suffolk and West sussex aimed at helping care home staff to provide high quality end of life care

ABC, ACP and the Six Steps programmeCASE STUDIES

2: sIx sTePs ProGrAmme HeLPs To ForGe NeW LINKs

1. eAsT oF eNGLAND’s WIDe-rANGING ProGrAmme For CAre Homes

“The main thing about this programme is that it is flexible.Thereisabigdifferencebetweencarehomesand that meant they needed different approaches.” she also pays tribute to the “fantastic” work of the project leads and facilitators, who are managed by the Cancer Networks.

The scheme is already making a difference. A survey of 20 homes shows that staff feel much more con-fidentindealingwithendoflifeissuesasaresultof the project, while many more residents are now being offered the chance to indicate their preferred place of care and death. There is also some smallscale evidence it is helping reduce admissions to hospital.

one participant said: “[The course] has made me fall in love with nursing all over again,” while another commented: “It was more than an education pro-gramme - it results in a change in thinking, attitude and priorities.”

Vanessa hopes the project will be able to continue be-yond next year in order to embed the learning as well as expand its reach. There are already plans for a ‘train the trainers’ pilot which should begin later this year.

The project has evolved as it’s gone on and now ena-bles individual care homes to customise the training to theirneeds,shesays.“Thekeyisflexibility–andI’mabsolutely convinced this is now a sustainable model.”

“The assessment and accreditation process is robust be-cause it needs to be,” says st Luke’s Head of education Gail Wilson. “If we are giving our brand to an accredita-tion system then we have to be assured that there is a real commitment by the organisations. We are commit-ted to providing training that really makes a difference.”

The six-step accreditation is now a local quality marker recognised by the local authority. “Homes prefer to have a local quality mark linked to their local hospice which families recognise, as an alterna-tive to the national GsF scheme which can be very expensive,” says Gail.

The programme has led to a number of innovations. one home, for example, set up an awareness board, called Life is for Living, which encourages staff, resi-dents and their families to express their wishes, while anotherproducedabereavementsupportleaflet.

It has also helped forge links between many of the care homes. As one participant put it: “It’s helpful to share experiences with other care homes. We used to see each other as competitors but it’s nice to have a local supportive network now.” more cohorts are due to start in september.

For the past 18 months Lead Facilitator Annette Villis and her team have been working to ensure all care home residents in suffolk have the option of making their wishes known through an advance care plan.

The suffolk ACP Project has reached around 60 of the 80-plus care homes in the county and most residents are now able to complete advance care plans if they wish.

The secret of the team’s success, says Annette, has been a multi-pronged approach to educa-tion, offering a range of different training opportunities, not all focused exclusively on ACP. so care homes can opt for a mix of one-day ACP workshops, the more intensive six steps training programme,

a skills for Care accredited module and e-learning as well as work-based face-to-face learning. There are also plans for ‘mop-up’ sessions at the end of the project for those care homes that have not so far engaged.

“our remit is about ACP and that’s what we’re there for,” she says. “But knowing our local area we feel we need to take a broad approach because otherwise it just doesn’t get embedded.”

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The sussex Community Trust end of life care team has held two NeoLCP-funded training events for senior care home managers on implementing the advance care plan and backed this up with additional support and face-to-face training over the following six months.

A total of 130 participants – representing around a third of all care homes in the area – took part in the one-day events last autumn, which introduced del-egates to West sussex’s newly piloted advance care plan, entitled My Life, My Wishes, My Future, as well as offering practical advice on how to implement it.

Delegates heard from a range of speakers, including care home managers already using some form of ACP while the area’s three end of life care co-ordina-tors also offered help and action planning.

The vast majority of participants were enthusiastic about the events, saying they contained information they could use in their work and met both the conference’s stated objectives and their own personal objectives.

Interestingly, all those attending claimed they were already using the ACP in their homes. But on closer in-spection it emerged that for some this amounted to little more than discussing people’s funeral arrangements.

The evaluation showed that most now felt they had greater,orasmuch,confidenceasbeforeintalk-

4: TWo ACP TrAINING DAYs WITH FoLLoW-UP sUPPorT

3: sPreADING THe ACP messAGe To sUFFoLK’s CAre Homes

Another factor is that some staff simply can’t get away for external training so sometimes it makes more sense for the trainers to come to them. The most successful way forward is probably a combina-tion of approaches, she says.

Given that the ACP team only numbers four staff, it’s also vital that community colleagues such as district nurses and GPs are able to reinforce the message.

An important adjunct to this has been My Advance Care Plan, a folder containing information about patients’ wishes which follows them wherever they go. “It’s very simple but actually it’s had quite an effect in terms of getting ACP into the wider world,” says Annette. “The GPs love it and even patients are now asking for it.”

The project, which began in June 2011, is due to finishnextMarchandalreadytherearerealsignsofprogress. By march 2012 three quarters of residents had been given the option of completing an ACP. And of those who complete one, most seem to be achieving their preferred place of care and death. meanwhile the number of care home deaths has beenrisingsteadily.Staffalsoreportincreasedconfi-dence about discussing end of life care issues.

Annette is optimistic that by the time the project ends all care homes in the area will have received some end of life care training, residents will be routinely completing ACPs and deaths in care homes will continue to rise while hospital admissions fall. “It’s going to be a challenge,” she admits. “But it’s a feasible target and we’re determined to get there.”

ing to someone about issues surrounding death and discussing treatment options as well as the principles and practice of advance care planning.

Perhaps surprisingly, a small minority said they felt less confidentasaresultofattendingtheevent.Thisprob-ablyreflectsthefactthattheynowrealisethescopeand scale of ACP, suggests sandra Vargeson, end of Life Care Co-ordinator with sussex Community Trust.

The evaluation showed that following the training most care homes were now using the West sussex document or had stuck with the documentation they already had. some were now adapting the West sus-sex ACP to their needs while others were adapting and improving their own documentation.

But although the events were popular, sandra stress-estheywillneverbesufficientinthemselves.Akeyto the initiative’s success has been West sussex PCT’s decision to fund two band 6 rGNs to provide the equivalent of one day a week support for six months.

As a result they contacted over half of all care homes in the south of the county, whether they attended the con-ference or not, to offer help and advice or face-to-face training sessions. “We made it clear that we expected to see some changes,” says sandra, “and the follow-up allowed them to identify any problems so that we could offer some teaching support where needed.”

suffolk’s ACP Project offers a range of different training opportunities

heard of PPC but the majority reported being com-fortable/very comfortable or neutral about talking about death and dying with someone close, and, similarly, with healthcare professionals. All respond-ents were provided with a copy of the PPC in the questionnaire pack and were asked a series of ques-tions about it. most indicated that the PPC seemed easy to complete and fewer than one in ten thought that the design and presentation of the document needed to be improved.

A staff version of the survey was distributed to 781 com-munity nurses via post or email with 153 being returned. The majority of nurses had heard of PPC and over two thirds reported having initiated a PPC with a patient. However, almost one third reported occasions when they had wanted to introduce PPC but did not feel skilled enoughandasignificantminoritysaidtheyfeltthattheyshould have introduced it but had left it too late. The mostimportantfactorininfluencinganurse’sdecisionabout whether or not to use the PPC with a patient was the nurse’s assessment of the patient’s willingness or desire to discuss illness and end of life. Further details aboutthesefindingswillbepublishedinthenearfuture.

Thefinalpieceofthisresearchwasapilottoexploresomeoftheissuesthatemergedfromthephase2find-ings. A one-page anonymous questionnaire was created and distributed to members of the public, together withaPPCdocumentandaNEoLCPinformationleafletaboutPPC.Twenty-fivepeoplecompletedandreturnedthe questionnaire. most had never heard of PPC and only two people had completed a PPC for themselves. However, most felt that more should be done to make the public aware of PPC.

Thefindingsfromthisstudyindicatethat,giventheopportunity, members of the public are willing to en-gage with the topic of end of life care and are mostly comfortable doing so.

However, there is a need to recognise the way that professionals have the potential to block end of life care discussions. Assumptions about people’s lack of willingness to discuss death and dying need to be challenged.Thefindingsalsoindicatethatwhilethecurrent version of the PPC does not need revision at this time, there is potentially a need for better public access both to the document and to information about advance care planning and end of life.

Itishopedthatthefindingsfromthisstudywillleadto better communication about end of life wishes and preferences among patients, family members and healthcare providers.

This article presents independent research commissioned by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) programme (grant refer-ence number PB-PG-0407-11227). Ethical and governance approvals were obtained from the NHS Research Ethics Serv-ice and all 12 participating PCTs. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

A major new evaluation of the Preferred Priorities for Care (PPC) tool has been completed by researchers at Lancaster University, in partnership with Lancashire and south Cumbria Cancer services Network.

The 26-month study, which was completed in 2011, hadtwoprimaryaims:first,tounderstandtheexperi-ences of patients and healthcare professionals who have used the PPC and second, to understand the barriers that deter others from using it.

There were two phases to the research, which took place across 12 primary care trusts in the North West of england. In phase 1, in-depth individual interviews were conducted with 40 nurses (20 who had used the PPC and 20 who had not) as well as a small number of patients and family members. The inter-views were anonymised, transcribed verbatim and then subjected to detailed thematic analysis, using Atlas.ti software to organise and manage the data.

Three key themes emerged from phase 1:

Barriers exist to PPC use or end of life discussions 1. The decision-making process for introducing the 2. PPC and initiating end of life discussions, including when and how to introduce the PPC, is key There is a need for proper PPC infrastructure and 3. support.

A paper exploring these issues in more detail is cur-rently being prepared for publication.

In phase 2, the research team developed two versions of an anonymised quantitative survey, based on the findingsfromphase1.Apatientandfamilyques-tionnaire was posted to 2,000 people on GP lists of which 445 were completed and returned. The result-ing data was carefully analysed and produced some significantfindings.

most patient and family respondents had never

FeATUres / PPC 9

Barriers still exist to the use of PPCs, a major new evaluation reveals. But, say authors mary Turner and Iris Cohen Fineberg, the evidence suggests that given the information and support, most people want to be involved

the PPC challenge: support and awareness

Given the opportunity, members of the public are willing to engage with the topic of end of life care and are mostly comfortable doing so

“

”

ABouT The AuThoRS

Dr Mary Turnerresearch Fellow, Lancaster University

j.m.turner@lancaster.ac.u• k

Dr Iris Cohen FinebergAssociate Professor Associate Dean for Academic Affairs, stony Brook Universityiris.fineberg@stonybrook.ed• u

Preferred Priorities for Care

Historically palliative care services in Wales were incon-sistent and patchy, with most services focused on cancer.

The transformation began in 2008 when a major re-port into palliative care provision, commissioned by the Welsh Government, made wide-ranging recommenda-tions for the future of services in Wales. The Palliative Care Implementation Board under the leadership of Baroness Finlay of Llandaff (pictured) was established to help implement these recommendations.

The board’s work is based on the following core principles:

Good end of life and palliative care should be •available to all across Wales Fairness of service provision must be underpinned •by high standards of end of life care Close integration of services in an area, whether •provided by the NHs or the voluntary sector, is essential for continuity of care.

The primary focus of the reforms has been the non-cancer population with end of life care needs, an increasingly ageing population, who are living longer with co-morbidities, and younger patients surviving treatments whose management is complex. The board also developed a funding formula that would meet core service provision and ensure strong pallia-tive care teams in every area.

Collaboration and integration across services was critical, with services funded fairly, regardless of provider. A Clinical Implementation Group was established andeachhealthboardinWalesidentifiedan executive lead responsible for end of life care together with medical, nursing and management leads.

The work programme has led to increased capacity and greater access to specialist and respite hospice beds as well as the development of hospice at home services. Increased support has also been offered to primary care teams and patients. This has been un-derpinned by the introduction of seven-day working by clinical nurse specialists across Wales (see below).

Health care support workers have also been appoint-ed into specialist acute teams to help support families and maintain dignity and respect for patients in the terminal phase, particularly in busy acute settings.

In addition the programme has developed a palliative care clinical information system and improved access to drugs out of hours, using the Just in Case Box, Anticipatory Prescribing Programme, approved by Welsh Government. The sealed box can be prescribed in advance and left in the home of palliative care pa-tients in the last months of life to alleviate symptoms in an emergency situation.

Another crucial element of the reforms has been findingwaystomeasurethequalityofthecareprovided. This is now being addressed through the Wales-wide user evaluation programme iWantGreat-Care for specialist services (see next page). The Dying Well matters programme also provides patient stories from across all services.

Phase1oftheprogrammehasnowfinishedandhasbeen seen as a big success. Phase 2, which began in 2011, aims to build on this by focusing on patient-centred care, using an ‘integrated care priorities’ ap-proach,Thisreflectstheimportanceofensuringthatthe patient’s and family’s priorities are met, keeping the focus of care very much on their wishes.

The work is enhanced by the introduction of peer re-view and a commitment to end of life care research.

more information:veronica.snow@wales.nhs.uk

HoW A seVeN-DAY-A-WeeK serVICe Is TrANsFormING CAre

The Palliative Care Planning Group report of 2008 (commonly known as the sugar report) represents as big a step change for end of life care in Wales as the end of Life Care strategy did for england. It made a number of recommendations for change but one of the most eye-catching was that specialist palliative care nursing should be available seven days a week throughout the principality.

In the three years since then that recommendation has become uniform reality. Aneurin Bevan Health Board’s specialist palliative care hospital team, which coversthewholeofGwent,wasoneofthefirsttoimplement it.

The team, which serves three acute hospitals - royal Gwent, Nevill Hall and Ysbyty Ystrad Fawr - was already concerned that its inability to offer support at weekends left some patients vulnerable. It was also aware that a number of complaints to the health board related to inadequate end of life care at week-ends and bank holidays.

Team members also found themselves embroiled in “frantic Fridays” – when they were rushed off their feet putting in contingency plans for the weekend – and “manic mondays” when they had to resolve crises that may have blown up in the intervening two days.

“We did the best we could, trying to plan for any potential problems,” recalls team leader Joanne Lane. “No one could foresee what new admissions would occur over the weekend - it was far from satisfac-tory. Assessments were often delayed and symptom control was not always optimised.”

FeATUres / WALes 10

In the last four years Wales has made big strides in supporting people at the end of their life. Below we explain the background and focus on two initiatives – the seven-day a week specialist service and patient and carers’ feedback

Why dying well is a top priority in WalesFOCUS ON WALES

iWantGreatCare asks a series of questions about services ranging from cleanliness and food to trust and respect. It also asks respondents if they would recommend this service to others. People are asked to score each ques-tion on a scale from 0 (very poor) to 10 (excellent) as wellastomakeanyspecificcommentstheywish.

The results are coded to identify the organisation that people are scoring and then sent to the central processing body which produces monthly reports givingeachserviceitsownresults,flaggingupanyparticular issues of concern and offering the organi-sation an indication of how their results compare with others across the principality.

An alert highlights any evaluation rating that is below 7 out of 10 and this triggers an invitation to the responder to discuss any potential problems with the programme manager.

st David’s Hospice in Llandudno, Gwynedd, which serves all of north west Wales, has been involved in the scheme for the last 18 months and has found it invaluable. “You do try and do your own in-house satisfaction surveys,” says Clinical services manager Nia rosser-Hughes. “But if this is already set up and offering analysis and comparisons, why reinvent the wheel?”

so far the results have been extremely favourable with the hospice regularly receiving scores of 8 to 10 in all categories - for both its inpatient and day care unit. Individual comments have also tended to be verypositivealthoughtheyhaveflaggedupafewissues about food and individual care.

Nia’s only reservation would be that the survey in its current form doesn’t provide the detail needed to give a deeper insight into what people think of the hospice’s services. “It would be nice to be able to drill downabitintothesefigures,”shesays.

But overall she has no doubt that iWantGreatCare has helped the team understand better the needs of patients and their carers and has served as a good benchmarkingtool.Ithasalsobeenabigfilliptothemorale of her team. “I always pin the results on the board each month and that gives all the nurses a nice boost,” she says.

The consistently high scores also help in generat-ingfundsforthehospiceandinraisingtheprofileof the organisation. But that doesn’t mean Nia will ever rest on her laurels. “our ambition is to see all our scores at 100%!”

Then came the sugar report and in November 2009 theNyeBevanteamwasoneofthefirsttochangetoseven-day working. “We were in a privileged position inthattheteamhadalreadyidentifiedthissoitwasrelatively easy to instigate change because all the team believed in it,” she says. “our main aim was to ensure that the changes we made had the greatest impact.”

An implementation plan was developed which incorporated two particular initiatives which helped tomaximisetheimpactofthenewservice.Thefirstinvolved regular weekend visits to areas that hadn’t traditionally used the team’s services such as emer-gency admission units. This helped to prevent many hospital admissions and enabled many patients to be cared for more appropriately in the community.

The team also introduced a triage system to ensure that the patients in most need would be guaranteed intervention at the earliest opportunity. Initially this only operated at weekends but it has now become a daily, routine part of the way the service operates.

Although the team received some extra funding to make the changes, this has not led to an increase in the seven-person team. By ironing out the previ-ous peaks and troughs in the week, the new system isnowmuchmoreefficient.“Ithasincreasedtheworkload but it’s also changed the way we work – the work is now spread much more evenly over a seven-day period,” says Joanne.

The results have been dramatic. The nursing team is reporting higher levels of morale and job satisfaction. Generic staff also appreciate the weekend support, saying they now feel safer and better supported as it is often the most junior doctors and nurses working over the weekend period.

most importantly, patients and carers are hugely positive about the changes. They feel more valued and sup-ported and staff are able to intervene earlier, monitor the care more closely and improve symptom control.

It also means the team is now able to guarantee same day discharge – on any day of the week – for patients whose condition is rapidly deteriorating and who wish to spend their last days or hours in their normal residence.

Joanne has no doubts the 7/7 system could be transferable to england. “one of the biggest frustra-tions I hear from english colleagues is that they don’t have the systems to allow them to get patients home quickly at weekends,” she says. “This initiative might needtobeadaptedbutitisdefinitelytransferable.And the beauty is that you need very little extra resources to implement it.”

HoW PATIeNT AND CArer FeeDBACK Is BoosTING HosPICe CAre

measuring the quality of end of life care is always one of the toughest challenges. Three years ago Wales grasped this nettle by setting up its national survey of patients and carers receiving specialist palliative care.

That survey, entitled iWantGreatCare, has now been complemented by Dying Well Matters which seeks to es-tablish what people think of the end of life care services they receive in general care settings across all services.

FeATUres / WALes 11

Care at st David’s Hospice: the feedback has been positive

Dementia standard

NICe’s draft social care quality standard on dementia is now open for consulta-tion, closing at 5pm on 16 october. For more information click here

Rich picture

The rich picture on end of life is the lat-est in the suite of “rich pictures” from macmillan’s Intelligence and research team, exploring the experiences of people who are at end of life. For further information contact matthew steele at msteele@macmillan.org.uk

CoPD video

Dunedin Hospital in New Zealand has produced a new video about end of life care and advance care planning for CoPD patients. For more information click here.

hospice directory

The Hospice and Palliative Care Di-rectory: UK and Ireland 2012–2013 is now available. The directory has over 1,000 entries and contains usefulfactsandfiguresonhospiceand palliative care provision. To buy a copy (price £10), please email the publications team.

Code of conduct

skills for Care and skills for Health are holding a consultation on a new code of conduct and minimum training standards for healthcare support workers and adult social care workers in england. The con-sultation ends on 7 september.

Acupuncture factsheet

The British Acupuncture Council has produced an evidence-based factsheet on palliative care and acupuncture.

time to talk

Dying matters has published a leaflet on starting end of life care conversations with people affected by dementia. Time to Talk covers topics such as what to talk about, when to talk and what might hap-pen if you don’t talk.

COMING EVENTS

Managing crises

NCPC is holding a one-day confer-ence at Avonmouth House, London on september 13 entitled Managing crises at the end of life: responsibil-ity, welfare and choice. For more information click here or email: k.mcnaboe@ncpc.org.uk.

Salford conference

A conference to showcase and share current end of life care practice in salford takes place in manchester on 8 November. For more information email info@eventprouk.com.

GSF conference

The GsF Annual Conference, Living well until you die, takes place at the Friends’ meeting House, euston road, London on 28 November. For more details contact the GsF Centre on 01743 291891.

help the hospices

The focus of this year’s Help the Hospices conference is community engagement and takes place from 29-30 November in manchester. For more information contact Jean Hindmarch.

Celebrating care homes

registration is now open for the Celebrating Care Homes Conference in London from 9-10 may 2013, or-ganised by st Christopher’s Hospice. There is an early bird rate of £120 forthefirstdayifyouapplybeforethe end of october. For more details click here.

News in BriefNeWs IN BrIeF 12

New website

A new website and app offering up to date news and views on hospice, palliative and end of life care issues around the world is to be launched inOctober.Tofindoutmoreaboutehospice visit the website or email info@ehospice.com

Dementia learning

The Department of Health has commissioned skills for Care to support the delivery of a national £2.4 million learning and develop-ment programme for the adult social care workforce supporting people with dementia. For more details click here.

Palliative academy

Terms of reference have been agreed to create a new palliative care academy. Norfolk & suffolk Palliative Care Academy – believed to be the firstinthecountry–aimstoimprovethe skills of the workforce and bridge the health, social care and education gaps. more information: david.smith@nchc.nhs.uk

hydration campaign

NHs Kidney Care has launched a campaign to encourage healthcare staff to better monitor and manage inpatients’fluidstatus.Hydration Matters posters have been distrib-uted to acute trusts and nursing homes. Additional resources are available by clicking here.

Grant applications

The deadline for applications to the Department of Health’s £60 million capital grant programme for adult and children’s hospices in england is 5pm on 5 November. The minimum grant will be £25,000 and upper limit is not expected to exceed £750,000.

NATIoNAl END oF lIFE CArE ProgrAMMEPHoNe: 0116 222 5103emAIL: information@eolc.nhs.ukTWITTer: @NeoLCP

3rd Floorst John’s Houseeast streetLeicester Le1 6NB

For more information on the National end of Life Care Programme, including discussion forums and an events calendar, please visit:www.endoflifecareforadults.nhs.uk