A DIGNIFIED REVOLUTION
Alone we can do so little; together we achieve so much!
News Update: September 2008
Welcome to the September news update. As you know we are now online and we are uploading information on a regular basis. The website also contains a blog so if you would like to contribute we would like to hear from you
Below are details of forthcoming events which might be of interest
Helping to ensure that older people are treated with dignity and respect
Friday 7 November 2008, Taff Housing Association, Cardiff
Due to overwhelming demand we are running this event in the morning and the afternoon of 7 November. Both events are now fully booked
Helping to ensure that older people are treated with dignity and respect
Tuesday 11 November 2008, 9.30am – 12.30pm
Glyndwr University, Wrexham
Dignity is more than just a word
The workshop is designed for anyone who cares for people as part of their job role – nurses, healthcare workers, volunteers, etc
Tuesday 18 November 2008, 9.30am – 4.30pm
The Open University in Wales, Cardiff
For more information about the above events email info@dignifiedrevolution.org.uk
We welcome your comments and suggestions. If you have any information that you would like to share with others please let us know and we will be happy to circulate it in the next newsletter.
If you are reading a copy of this email forwarded to you by a colleague we may not have your contact details. If you would like to guarantee a regular monthly copy of the mailing send your details to info@dignifiedrevolution.org.uk
ACTIVITY
Raising the profile of A Dignified Revolution
We have submitted an article to Nurse Management Journal and we are currently waiting to hear whether it will be published. We have also been contacted by a freelance journalist who is interested in helping us to attract more publicity
Values based training
On 8 September 2008 we participated in a values training workshop which was designed to begin the process of drawing a proposal for a joint training programme and quality standards across health and social care services in Powys. It was an extremely interesting day with contributions from health, social care and independent sector professionals. There was a review of existing training provision and discussion about whether the training needed to be extended to all staff in organisations as it was acknowledged that what happens on the frontline is often influenced by the attitudes, behaviour and actions of senior members of the organisation. It was also acknowledged that senior level activity is influenced by Government policy and targets. Future meetings are planned to develop ideas from the days discussions
Perceptive professionals embedding dignity and respect in a care environment
We recently piloted a workshop which was designed to:
· appreciate more fully what dignity means to a patient
· experience what being treated disrespectfully feels like
· practice using practical tools to increase the respect shown to patients
· understand that staff are also entitled to be treated with respect
· enhance you communication skills
· take an action plan back to the workplace
A varied group of individuals participated in the workshop which evaluated very well. We shall be looking at running more of these workshops in the future. The complete evaluation from the day can be found in the blog section of our website, dated 12 September 2008
Healthcare Inspectorate Wales (HIW)
We met with the Assistant Director of HIW to gain a better understanding of the work of HIW and to share some of our concerns. Areas that we felt needed to be focused on included:
m nurse education, specifically around where values are taught to underpin practice. A meeting is to be set up with the lead for nurse education in HIW
m pressure from HIW around Protection of Vulnerable because POVA is not mandatory for the NHS (read more about POVA below)
m end of Life care – HIW carrying will be carrying out a review and we have been invited to participate
m independent advocacy particularly around continuing care. HIW is planning to undertake a review of advocacy services
We are to be provided with the list of HIW focus/reference groups and we have been invited to contribute in any of the areas in which we have an interest
We have been Invited to meet with staff in the future to share experiences
We were also informed that HIW are developing a dignity and respect audit tool
Romilly Nursing Home
We visited Romilliy Nursing Home in Canton, Cardiff to speak to staff about A Dignified Revolution and dignified care
Meeting with nurses at St Tydfils Hospital, Merthyr Tydfil
We met with nurses at St Tydfil’s Hospital to talk about A Dignified Revolution and dignified care. Discussion from this event was useful in gaining a better understanding of some of the issues that nursing staff face on a day to day basis. It was also interesting to find that whilst some of the nurses were aware of the Welsh Assembly Government’s Dignity Campaign, and had attended awareness raising sessions, there were others who were not aware of it
Network Wales Award
We have submitted an application to the Network Wales Awards which has a category for effective communication. We are also aware that a number of people have nominated us for category 3, which is the most admired organisation. This is described as the organisation or group that is admired most for the causes it represents and the work it does. We would like to thank everyone who has supported us and we will keep you posted on how we get on
Nursing & Midwifery Council (NMC)
We have requested a place at an NMC workshop that is focused towards developing guidance for the care of older people
Care and Repair Cymru annual conference
Lorraine Morgan, founder member of A Dignified Revolution, facilitated a workshop at the recent Care & Repair conference. It was focused on public knowledge around nursing and older people as well as raising awareness of A Dignified Revolution. The workshop revealed that many were unaware that:
m the UK no longer educates nurses as general nurses but only as specialists
m nursing education has changed and no longer is solely work-based
m there is a regulatory body to which the public can complain directly about neglectful nursing practice but that this UK body, based in London has recently been under scrutiny for delays in dealing with professional conduct cases. A more details report will be posted on the blog shortly
Department of Health Dignity in Care Campaign
28 people in Wales have signed up on the Department of Health’s Dignity in Care Campaign website to become dignity champions. A Dignified Revolution is soon to be featured in the Wales section of the site and Dignity Champions will be made aware of us in the October newsletter
We have been contacted by:
m Healthcare Inspectorate Wales (HIW) and Care and Social Services Inspectorate Wales who are completing a joint review of the National Service Framework (NSF) for Older Peoples Services in Wales. We have been invited to participate in workshops being held in October
m the British Lung Foundation who have offered us a stand at their forthcoming user events in north and south Wales
m Millie Kieve with an invitation to have a stand at the APRIL conference on 6 November 2008
m Natalie Grazin, Assistant Director, Supporting Patients from the Health Foundation
m a nurse in City University, London, who with another colleague, has been appointed to promote dignified care in hospitals
m Eugene Dubens who wanted to check that we would not mind if the community created a link to our website from the Caerau Website. He reported that “there is an increasing demand for this information and we believe more members of the community could access your website via an external link from our website” We are more than happy for anyone to create a link from their site to ours and we thank all those who have included information about us on their websites. The network is growing!
m Neath Port Talbot access group which is active in raising awareness of access issues to its local NHS trust
m a senior practitioner from a joint discharge team in Pembrokeshire. The team promotes good discharge planning for patients. She reported that she had been involved with others in developing Passing the Baton, a discharge planning toolkit which is designed to provide NHS staff with a better understanding of responsibility and accountability when caring for older patients in hospital. She is very interested in receiving regular information on our progress as a group and offered support
m a nurse who advocated on behalf of a family friend in hospital. She has reported a case of what appears to be severe neglect of an individuals medical needs and, as a result, this person has died
PROTECTION OF VULNERABLE ADULTS (POVA)
Following the circulation of the August newsletter we received the following information from one of readers, which we would like to share with you
“As you no doubt know, the existing POVA list only covers those working in social care settings. So, the majority of nurses and healthcare workers are not covered by the current legislation. However, the provisions of the Safeguarding Vulnerable Groups Act, 2007 will cover health staff too, under the remit of the Independent Safeguarding Authority (ISA). This is in the process of being set up ready for implementation of the Act in autumn 2009”
“POVA training is a slightly different matter due to the fact that it is not mandatory for staff to have training on abuse and protection (even for social care staff). The majority of Trusts do appear to be establishing training. Many of them are taking part in multi-agency training with local authorities and the Police, which is ideal. I know of a couple of English Trusts that have decided that as it is mandatory for all their staff to have child protection training they will operate the same way for adult protection and therefore tell their staff that it is a (local) mandatory requirement to have such training. Unfortunately that doesn't happen everywhere”
“Also the introduction of the ISA will not alter the situation relating to training as there were no provisions in the Act for mandatory training about abuse and protection. However, there is currently a review of the guidance documents on adult protection, In Safe Hands (Wales) and No Secrets (England) taking place, so by all means express your views about the need for mandatory training for all staff (inc. health of course) as part of the consultation process for the documents that will be happening in the autumn”
CASE STUDIES
We have received a case study that relates to a care home resident who prior to leaving hospital did not appear to have been offered a formal re-assessment of her needs. She agreed to go to the nursing home on the recommendation of a Charge Nurse, who referred to the home’s good reputation. However, the home did not live up to the description that has been given and the elderly lady was extremely distressed and expressed a wish to go home. The case is being supported by an independent voluntary sector advocate acting on her behalf. From other communications this does not appear to be an isolated case
We also received a letter from a gentleman who has recently been trying to access respite services for his wife (who has had a major stroke) whilst he went into hospital. He tried a number of homes but was unsuccessful - they were either full or did not provide respite care. Eventually, after receiving help from Age Concern he found a home. In addition to these difficulties, he shared with us the conflicting information that he received from the local council and the care homes in terms of the amount of financial support he and his wife were entitled to if they both went into a care home. This experience is not unique. We have received similar concerns abut the complexities of the systems in place and the conflicting information that is often given to people
We continue to receive regular requests for copies of our case studies, which document elderly patients journeys through hospital. Circulation has generated numerous responses from people who have similar experiences to share and requests to use the case studies in educational settings and to improve services provision. Please email if you would like to receive copies
GOOD NEWS CORNER
We have received no examples of practice worth sharing this month. However, when we met with the nurses at St Tydfil’s Hospital in Merthyr Tydfil we encouraged them to send some examples. Hopefully, we will be able to share these with you in our next edition
DYING WITH DIGNITY
Following contact with the National Council for Palliative Care I came across a paper entitled: contemporary hospice care: the sequestration of the unbounded body and 'dirty dying' by Julia Lawton, Sociology of Health and Illness (1998)
Within this article it provides a definition for palliative care, which is:
“active total care offered to a patient with a progressive disease and their family, when it is recognised that the illness is not curable, in order to concentrate on the quality of life and the alleviation of distressing symptoms within the framework of a co-ordinated service” (Standing Medical Advisory Committee 1992)
This implies that anyone, not only cancer patients, with an incurable illness should be offered palliative care.
Reflecting on this as a health professional and someone who has experienced the end of life care of a close relative I wonder how many people, general public and professionals interpret the term palliative care as care that is solely allocated to patients with cancer?
Drawing on personal experience there was acceptance, by health professionals, that my mother’s condition was not curable. Following a severe stroke the outcome of the multi disciplinary assessment (MDA) was that she had no potential for rehabilitation. However, it was considered that her condition was predictable (stable), though it could be argued that it was progressive. Discussions with medical staff (and from viewing and discussing the CT Scan) indicated that there would be no recovery from the damage that had been caused by the stroke.
Despite the evidence there was no discussion about the fact that she was nearing the end of life, and no consideration given to the quality of life and the alleviation of symptoms to make her more comfortable. The focus was on how quickly she could be transferred to a nursing home where she was not eligible for any therapy services even though she had swallowing problems, caused as a result of the stroke. She lived for six months following the stroke and during that time spent time on three different wards in the hospital trust before being transferred to a step down bed in a nursing home. From there she was transferred to a shared room with the promise of a single room when one became available. Sadly, she never made it to the single room. She was transferred back to A&E because a month after entering the nursing home because her condition had seriously deteriorated. She died in an emergency assessment unit.
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The MDA is focused on continuing care, but from personal experience the emphasis is on the financial implications that it might have for the NHS rather than the quality of life of the patient who is entering the final few months of life.
Health and social care staff should be educated in end of life care so that people with conditions that are no longer curable receive the care that is most appropriate to their needs. If this is to be a nursing home then nursing home staff also need to be educated and skilled to manage such patients in order to ensure that death is dignified.
The National Council for Palliative Care is in the process of developing guidance for nursing homes.
If you have any views to share on this issue please email info@dignifiedrevolution.org.uk
FEEDBACK
“I have recently been to Bath, and whilst away visited a place named Bathampton. Whilst walking through the church I found a Dignified Revolution document. I was so impressed that your information had reached small places, so man, and so far!”
"I like the work that your group are doing, it is much needed"
“I have just had a look at your site. Very impressive. You have been busy”
"Enjoyed reading your newsletter and have had personal experience of lack of dignity etc within my family. I would be grateful if you could include me on your mailing list for the newsletter”
"Great newsletter - please could I be put on your mailing list"
REPORTS
On the right track? A progress review of the human rights of older people in health and social care
One year ago, the Joint Committee on Human Rights published a report on older people's human rights in healthcare which made a number of recommendations about steps needed to ensure these rights are protected when they use health and care services. This report published by Age Concern assesses the progress made on these recommendations over the past twelve months
Self funders neglected when moving into care
The Relatives & Residents Association has just published a report entitled Assessment Denied? Council responsibilities towards self-funders moving into care that looks at the problems that older people encounter when funding their own care. The report should be essential reading for every social worker and those involved in the care provision for older people
The personalisation of adult social care in rural areas
The Commission for Rural Communities has published this report based on the views of a range of people working with older people in rural communities. It describes the implications of an ageing rural population and its potential impact on the future of adult social care
The future of adult social care
The Department of Health's document, The case for change has opened a debate on the long-term future of England's care and support system. In light of this, the Joseph Rowntree Foundation has commissioned a series of four viewpoints, discussing some challenging issues around the future of adult social care: the concepts of duty and obligations, care, equity, and gender
USEFUL RESOURCES
Thinking about a care home
This guide is designed to inform older people and their families about the help that they can expect from social services. It covers an individuals right to have a needs assessment, the choices other than a care home that might be available and finances. It also provides information on what to do if you are unhappy with decisions made by social services, or someone in the NHS, or if you are unhappy about how you are treated in a care home. The guide can be downloaded from the Welsh Assembly website and should be available from local charitable organisations
Staying steady
Help the Aged has produced a book called Staying Steady. It has a lot of useful information about how to stay steady, how to improve strength and balance, how to ensure your home environment is safe and how to get help if you are anxious about falling. If you would like a copy of this book, e-mail adviceleaflets@helptheaged.org.uk
Easier access to advice and information for older people and their relatives and carers
FirstStop is a single gateway to free, independent information and advice about all aspects of care, housing and finance for older people. The FirstStop advice service will be delivered through a comprehensive website and a single dedicated telephone line: 0800 377 7070. The service will offer advice on a wide range of topics including care fees and funding care fees, choosing the right care home, social care provision, benefits and rights. FirstStop aims to have the advice line service available nationally by the end of 2011
John Wales patient transfer service
St John Wales provides modern Ambulances and comfortable cars along with a friendly, professional car service to patients across the UK and Europe. Its non-emergency patient transport is used by NHS Trusts, Social Services, repatriation and insurance companies, as well as private patients. Transport is also available to and from family gatherings, entertainment venues and sporting events where public transport is unsuitable
Dignity in care charter
Care Forum Wales has produced a dignity in care charter. The aim of the charter is to describe the standards and quality of service that people should expect to receive from a member of Care Forum Wales and to ensure that the services are responsive to people's needs and wishes, and to respect dignity at all times. To obtain a copy of the charter, or for more information tel: 01978 720242
Bouncers at mealtimes – whatever next?
Check out Age Concern's new and very funny viral marketing campaign aimed at tackling the problem of malnutrition among older patients in hospitals. The charity has unleashed 3 short clips on YouTube that show how simple solutions - like red trays and protected mealtimes - can help to improve nutritional standards on the wards
Part 1: Red Trays
Part 2: Protected Mealtimes
Part 3: Volunteers on the wards
If you would like to use these videos for presentation or training purposes you can request a free CD copy by emailing htbh@ace.org.uk
Guidance issued to improve nutrition and hydration standards in all healthcare settings
The National Patient Safety Agency (NPSA) has launched the next four in a series of ten factsheets for all healthcare staff and care caterers to support the 10 key characteristics of good nutritional care
Behind Closed Doors campaign
The aim of the campaign is to raise awareness that people, whatever their age and physical ability, should be able to choose to use the toilet in private in all care settings. "Toilet Access and Use" has been chosen as a marker of Human Rights and Dignity. A useful campaign resource is the Lay person's tool to perform an environmental audit of the toilets in a care setting
Human rights in healthcare project
The human rights in healthcare' project, led by the Department of Health in conjunction with five NHS trusts and supported by the British Institute of Human Rights aims to support the use of human rights based approaches in improving health and social care
Experienced based design
This guide provides practical information and tools for anyone who wants to incorporate experience into the way they provide services. Whether you just want to deal with complaints in a new way, or want to have patients and staff as equal partners designing new services, Experience based design will help use the actual experiences of patients, staff and carers to transform your services so that when patients are asked they do say that yes they had a great experience
IN THE NEWS
First older people's monitor to be published
The Welsh Assembly Government will publish the first ‘state of the nation report on older people's well-being in 2009. The report will provide research evidence on older people's health and reflect the aims and values of the Welsh Assembly Government's Older People's Strategy and the UN Principles for Older Persons
Welsh nursing homes inspected by the Health and Safety Executive (HSE)
The Health and Safety Executive (HSE) has released the results of a series of inspections carried out to look at the management of some specific health and safety risks at nursing homes across Wales during March and April 2008.
As a result of the findings, HSE will be contacting nursing homes in Wales to remind them of their duties to manage health and safety, and will be providing training resources to help homes improve standards
Cashback for nursing home care
Dozens of elderly and vulnerable Neath Port Talbot residents are in line for a share of a £167,000 handout. They have been forking out for nursing care when they should have been given it for free. The local health board (LHB) has now confirmed, following a review, that £167,570 is set to be refunded for the 36 cases deemed eligible for reimbursement. More rebate cases could also emerge. The review came about after a meeting in April when Dyffryn councillor Martyn Peters held a public meeting to raise awareness that people had been struggling to pay for care they should have been entitled to. Source: Care Appointments 26 August 2008
Patient's sex attack carer jailed
A care worker has been jailed for nine years for carrying out a "vicious" sex attack on an elderly patient at a nursing home. Gareth Jones, 22, from Trecastle, near Sennybridge, Powys, attacked the 77-year-old while getting her ready for bed in her room. She required emergency surgery following attack at The Mountains Nursing Home in Libanus near Brecon. Source: Care Appointments 26 August 2008
Major funding to support ageing population
An additional £37 million for this financial year has been announced for continuing healthcare, enabling the elderly to live more independent lives.
The announcement comes as new statistics show continued improvements in reducing the number of patients experiencing delayed discharge from hospital. This new funding comes on top of the recurrent £50 million that has already been allocated to Local Health Boards (LHBs) to help meet the financial pressures that are placed on continuing healthcare budgets as the Welsh population ages
Financial abuse of elderly 'huge'
Thousands of elderly people are having their life-savings, possessions and homes stolen by members of their own family, according to the charity Action on Elder Abuse The scale of the problem is ‘huge and terrifying’ with cash and property worth tens of millions of pounds taken last year. Solicitors say the rise in financial abuse is partly due to substantial rises in property values
FORTHCOMING EVENTS
Dying Well with dignity: meeting the challenges of multiple conditions
Thursday 16 October 2008
The Hellenic Centre, London
For more information email m.rana@ncpc.org.uk or tel: 020 7697 1520
Age of Opportunity
All Nation’s Centre, Cardiff
Wednesday 15 October 2008
For more information tel: 029 2043 1555
Better access: bringing health services into the care home
Wednesday 22 October 2008, London
For more information tel: 020 7359 8148 or email joy.mccarthy@relres.org
Carers policy conference Wales
Thursday 23 October 2008
Towers Hotel, Swansea
For more information email pauline.chivers@carerswales.org
Preserving dignity: can we protect elderly and vulnerable people from insult?
Wednesday 5 November 10am- 4pm
Abbey Community Centre 34 Great Smith Street London SW1P 3BU
For more information tel: 0870 013 0065 email: admin@sochealth.co.uk
Adverse psychiatric side effects of medicines & coming off medicines
Thursday 6 November 2008
For further information email april@eyas.co.uk
THE FUNDING OF A DIGNIFIED REVOLUTION
The common experience of how close relatives, whilst in hospital, had not been treated with respect and, as a result, lost their dignity led a group of individuals to establish A Dignified Revolution in January 2008.
A Dignified Revolution aims to ensure that older people are cared for with dignity and respect in hospital. We do this by raising awareness of dignity and respect issues to health professionals and to the general public
All our events and publications are provided free of charge. If we do not receive sufficient donations, then we pay for the difference out of our own pockets.
If you would like to help, we would like your time most of all. However, some cash would also be useful. £15 covers the cost of a person attending an awareness day; £30 covers the cost of printing and posting 100 leaflets; £100 covers the cost of one trip between North and South Wales to raise awareness of A Dignified Revolution.
Donations will help us to continue our work – so please give generously if you think our cause is worthwhile. Not a penny will be spent on administration or overheads – we don’t have any!
Cheques should be made payable to A Dignified Revolution.
We want to remain focussed on our goal of helping older people retain their dignity whilst in hospital. In order to avoid being diverted onto other issues and priorities, we do not seek statutory sector funding (although unsolicited grants will be accepted). So your support is important and will help to make a difference
ACKNOWLEDGEMENTS
We would like to thank the following people for giving their time and expertise to help develop resources to support A Dignified Revolution:
Lance Webster – for the design of our logo
John Dixon – for the development of the website
An individual (who would like to remain anonymous) for her production of our leaflet
The Welsh Language Board – for the translation of our leaflet
CONTACT DETAILS
A Dignified Revolution
Britannia House, 11 High St, Cowbridge CF71 7AD
Tel: 07811 159800
Fax: 01446 774864
Website: www.dignifiedrevolution.org.uk
Email: info@dignifiedrevolution.org.uk
