One Simple Thing Improving NHS services for people living with Dementia

One Simple Thing Improving NHS services for people living with Dementia April 2017 1 P a g e

A Carer s Experience ONE SIMPLE THING There are two stages - looking after your loved one whilst fearing what will happen next. You want to preserve their dignity and for them to experience the familiarity of the home they have loved and the love of their family. It seems a terrible thing to hand them into the care of strangers but the day comes when their complete physical collapse makes it inevitable. It is not just the brain that is wearing out but the body too. From this point you want to support the hospital staff and carers. You meet such contrasts - wonderful kindness but also its opposite, staff who are under stress themselves or undertrained. Monitoring would appear to be the key but all of the documentation necessary takes time which should be spent with the patient. A real problem we experienced was the use of male staff to give personal care to our mother - particularly in hospital. As an exnurse herself she found this completely unacceptable and was very difficult and aggressive towards them. The EMI home where she received palliative care until her death was excellent with staff who were more understanding of behaviour that others treated simply as bad behaviour. There has been far more publicity about dementia since she died in 2013 but I wonder how much awareness there is of the different kinds of dementia, particularly when it results from an illness such as MS. I've sat on hospital wards and A&E, nursing and care homes so often observing other patients as well as family members. The problems are so complex in so many cases that you can only admire the dedication of so many medical and support staff. Quite frankly so many of them look worn out. They know how crucial their role is but also that they don't have enough time. 2 P a g e

Contents Introduction... 4 Background... 5 What we asked... 7 What we heard... 7 Assessment and diagnosis... 8 Information and support after diagnosis... 9 Respect & Dignity... 15 Providing the right environment... 17 Funding... 18 Looking forward... 20 Appendix... 21 Contact us... 36 3 P a g e

Introduction This report has been produced by the Board of Community Health Councils on behalf of the 7 Community Health Councils (CHCs) in Wales. CHCs are the independent watch-dog of NHS services within Wales and we seek to encourage and enable members of the public to be actively involved in decisions affecting the design, development and delivery of healthcare for their families and local communities. CHCs seek to work with the NHS and inspection and regulatory bodies to provide the crucial link between those who plan and deliver the National Health Service in Wales, those who inspect and regulate it, and those who use it. CHCs maintain a continuous dialogue with the public through a wide range of community networks, direct contact with patients, families and carers through our Enquiries Service, Complaints Advocacy Service, visiting activities and through public and Patient surveys. Each of the 7 CHCs in Wales represents the Patient voice within their respective geographical areas. 4 P a g e

Background In January 2017 the Welsh Government launched its consultation Together for a Dementia Friendly Wales. The consultation sought views on developing and implementing a national dementia strategy for Wales. This consultation follows on from the publication of a number of reports focusing on dementia care in Wales. In March 2016, the Older People s Commissioner for Wales published her report Dementia: more than just memory loss 1. Her report reflected on the experiences of people with dementia and those who care for and about them. The Commissioner challenged everyone to build upon the work that had already been done to deliver a better quality of life for people living with dementia. In July 2016, the Alzheimers Society published its report Dementia in Rural Wales: the three challenges 2. The report found additional challenges for people affected by dementia in rural areas. In January 2017, taking into account the work already undertaken in this area, CHCs decided to undertake a wide engagement exercise to gather views and ideas from people across Wales on improving NHS services for people with dementia and their carers. We heard from many people whose lives had been touched by dementia in all its forms. We used what people told us to inform our response to the 1 Dementia: More than just memory loss (March 2016). Find out more at http://www.olderpeoplewales.com/en/news/news/16-03- 14/Dementia_More_Than_Just_Memory_Loss.aspx#.WRAKyXmGOUk 2 Dementia in Rural Wales (July 2016). Find out more at https://www.alzheimers.org.uk/info/20089/wales/240/dementia_in_rural_wales_our_new_report 5 P a g e

Welsh Government s consultation, which is included as an Appendix to this report. People shared a wide range of ideas for improving services for people living with dementia. Some of these suggestions could be taken forward by the NHS independently, while others would need to be taken forward in partnership with others. This report sets out in more detail what people told us. We hope that all bodies involved in the development and delivery of services for people living with dementia will use it to consider where and how they might improve. 6 P a g e

What we asked CHCs across Wales asked people whose lives have been touched by dementia one question: What one simple thing could the NHS do better to support people with dementia? We used a variety of ways to reach people. This included Twitter, a smartphone app, SMS text, Freepost and a dedicated answerphone. CHC members and staff also met with people all over Wales during February and March 2017. We received over 500 suggestions (mainly from carers) and our reach through social media was over 70,000 impressions. What we heard People shared a wide range of ideas with us. Some of these suggested small but important practical changes, and others proposed larger, system wide improvements. There are some common themes in the ideas people shared, and we have used these to structure our report. Importantly, almost all the responses we received recognised the vital role played by carers and highlighted the need to plan and provide care and 7 P a g e

support not only for those people with dementia but also those who care for them. Assessment and diagnosis Lots of people told us there is a need for earlier diagnosis. An early and direct route to diagnosis followed by early treatment, medication and service provision to secure best outcome. Early diagnosis is key. Some people talked about the environment in which assessments take place. For example, people highlighted the importance of a stress-free environment, and some people suggested that community settings might be more appropriate than busy District General Hospitals. Some people shared a positive experience of assessment. Examples included use of the Montreal Cognitive Assessment tool and computer based assessments. Some people particularly in rural areas referred to the effective use of telehealth. We want consistency across the board, swift accurate diagnosis for people living with dementia, more help to keeping us at home, 8 P a g e

scrap the PIP 3 system for people with dementia as of today there is no cure, we can't do it alone we need your help and support Information and support after diagnosis People frequently told us they needed better information when diagnosed. They want to know what to expect, what they can do to help delay and manage their symptoms and where to get support. Some people told us they had a positive experience which should be available to all. The NHS was pretty good! Mum went on courses to learn about it this was offered to her this should be done for everyone. Others provide a range of suggestions for improving support and information for people with dementia and carers. 3 Personal Independence Payment aims to provide help with some of the extra costs caused by long term illhealth or disability. You can find out more at https://www.gov.uk/pip/overview 9 P a g e

It would be really helpful if all carers and patients could be given one key worker who could help them stay informed about all the services available to them and help them to contact these. This wouldn't necessarily need to be a health professional but more a sort of facilitator who could keep in touch and have ready access to service points and good information on what's available. Most ordinary people have no idea what exists or how to access it and when a relative has dementia it's difficult to find out what you need, especially if you are already experiencing health problems yourself. Some people told us they struggled to cope with the practical and emotional implications of being diagnosed with dementia. Provide families with greater support to understand how to cope Many of the carers who responded told us they too would welcome more information and support to help them come to terms with the diagnosis and to help them support the person they cared for. 10 P a g e

Not all dementia is just forgetfulness. Inappropriate behaviour is a very hard thing to live with and people are unaware of why the person is behaving in this way. We weren t prepared for that. People also told us that dementia touches every part of their life. The information and support they need may be varied and wide ranging extending beyond healthcare and covering life changing matters, including finances, housing, work, benefits, etc. Dad s main concern was how mum would cope, and whether they would have to sell the house they had lived in since they were married 40 years ago. People want a joined up, multi-agency approach that helps them to access the information and support they need in one place. People also told us about their need for support from their employers. We received a response from a nurse who felt unsupported by her NHS employer: The NHS can support carers by treating them with equality and dignity...equality meaning treating the carer fairly according to individual needs and perhaps they can start this in-house first. 11 P a g e

People also told us they were looking for a flexible and responsive service to meet their particular needs. Far more responsive and flexible carers, and better training for [paid] carers Many people called for improvements in respite and crisis care. Patients should be able to go to groups, etc., to keep their minds active and give respite to carers and family Some people told us crisis care often came too late, or that the threshold for accessing crisis care was too high. My mother in law had dementia, and we found that there was a minimum of support offered until things got to crisis point, and she tried to take her own life, more than once. Some people suggested an on-call system for advice and guidance, available on a 24 hour basis (rather than just office hours). 12 P a g e

I think a dementia crisis team would be a good idea. I've seen many families who are happy to care for their relative at home but reach a point of crisis because of short term pressures. The care of the relative then suddenly becomes a burden. The family would have access to support that could provide a carer to sit with the relative to enable the family to deal with the other pressures. This would be a short term provision until the family were fully able to provide care again. People emphasised the importance of meeting individual needs and providing different levels and types of support. Simple things matter! More support in the community with resources such as - Community Agents - Memory Cafes - Befriending - Good Neighbours - Carers Clubs Pet therapy for people with dementia it s a great stress reliever. 13 P a g e

For many people this involved support for people to live well in their community for longer. For some, this meant providing greater support at home, as well as access to groups and memory clinics. Others pointed out that travel to such groups could be difficult for some people, and additional support is not always seen as being easily available, particularly for people in rural communities. Enable the family to use disability parking! My dad had dementia and taking him out was a nightmare Some people who are receiving care from more than one agency spoke of the need to improve communication. Much better communication between social services, families and the NHS. Where people have clearly expressed their preferences and wishes for their care, it is important that these are respected and responded to. We were told by some people that they welcomed the use of a This is me 4 book which recorded people s likes and dislikes. However, several people commented that some staff had not read it or did not provide care in line with its contents. 4 This is me is a tool for anyone receiving professional care who is living with dementia or is experiencing delirium or other communication difficulties. It is suitable for use in any setting at home, in hospital, in respite care or a care home and provides a valuable way of integrating person-centred care. Find out more at http://www.alzheimers.org.uk/info/20033/publications_and_factsheets/680/this_is_me_tool_for_people_with _dementia 14 P a g e

Carers reported that visits from family and friends often became less frequent when those they cared for were no longer able to communicate as they once did. This often led to carers themselves feeling lonely and isolated. Some people suggested a need for stronger networks for carers with similar experiences, as well as additional support when the time came to move on. Respect & Dignity Show respect. Respect the fact that these are people who have had lives and are now ill. Do not write them off. My mother has dementia and I am shocked at her treatment by the NHS and social services. Many people told us NHS staff treated those they cared about with dignity and respect. My father was diagnosed with Alzheimer s several years ago and has been treated (at Llandough) with dignity and respect in all interactions, even though it has not been easy to communicate with him. In particular, when my mother died, the staff spoke to him directly, made sure he was looked after and understood what was happening. However, others highlighted a need to improve respect and dignity for people with dementia. 15 P a g e

NHS staff can treat them with dignity. If they have lost their way around the hospital, staff can help them without making them feel stupid Some suggested this was due to time pressures, and called for staff to have more time with patients. Many people linked this with inadequate staffing levels and NHS funding. Some people called for better training for all NHS staff. My suggestion is that ALL staff working for the NHS gain a clear understanding of what dementia is. By learning about dementia, they will be better equipped to deal with patients who have dementia when they are hospitalised. The need for better and more effective communication was consistently identified. Answer my question as though it is the first time I ve asked it Active listening and positive calmness is a must!! These individuals are human beings.please be patient with them at all times. 16 P a g e

The one thing I can suggest is to continue to highlight the importance of communication when working with dementia patients. I find in practice and through personal experience that communication is key short sentences, no more than one person talking. Communicating in Welsh was identified as a key component of respect and dignity for some. My husband s last months were transformed by the involvement of a Welsh speaking nurse because Welsh was the language through which we have lived our lives. Providing the right environment Many people told us how the NHS can provide the right environment for people with dementia. Staying in hospital People suggested some improvements for people with dementia staying in hospital: Safe and easy access to outdoors, including a garden area Suitable activities Suitable and sufficient access to TV and radio when it is needed Quiet, calm space when needed Homely environment and familiar belongings Domestic toilet rolls and domestic toilet roll holders in hospital wards 17 P a g e

Accessing NHS services People told us how important it is to provide the right environment for people with dementia who may need to access any NHS service in the community or in a hospital setting. In particular, people told us someone with dementia may need: A calm, quiet environment in waiting rooms and clinical areas Clear signage Assistance (as required) to navigate appointment arrangements Support and understanding from NHS staff. Funding Many people told us they were concerned about funding for dementia care, which was seen by some as being very limited. In 1944 the NHS said that people s illness should be paid for from the cradle to the grave by the NHS the NHS won t pay for Dementia although it is an illness. There is a tax on Dementia but not on cancer or heart disease. Some people pointed to the Scottish system as being a way forward for Wales, with funding being provided for people s personal as well as nursing care. 18 P a g e

My One Simple Thing is this: imagine Jean was your mother, unable to afford the best in private care, then treat her as you would your own Mr Politician - and I will judge you on that basis People consistently told us that they had been unable to access services that were listed as locally available. They called for appropriate funding for groups and services to ensure they were sustainable in the longer term. Stop cutting funds to local community groups that help and support individuals with Dementia, and that includes carers and their support groups. I wonder when the government will actually take the cotton wool out of their ears and actually take notice as, by supporting the local groups in the long-term, it is far cheaper than paying for hospitalisation. 19 P a g e

Looking forward Over 500 people took the time to tell us one simple thing that could improve NHS services for people living with dementia. Their voices deserve to be heard. We welcome and await the outcome of the Welsh Government s consultation on developing and implementing a national dementia strategy Together for a Dementia Friendly Wales. CHCs in Wales will continue to work with the NHS, the Welsh Government and others to ensure that the needs of people living with dementia are at the heart of service design and delivery. 20 P a g e

Appendix Consultation response form: Together for a Dementia Friendly Wales (2017-22) Overview Proposed Together for a Dementia Friendly Wales (2017-22) How to respond Responses should be submitted by 3 April 2017 to: mentalhealthandvulnerablegroups@wales.gsi.gov.uk Or post the completed form to: Mental Health and Vulnerable Groups Health and Social Services 4 th Floor, North Core Welsh Government Cathays Park Cardiff CF10 3NQ Further information and related documents Large print, Braille and alternative language versions of this document are available on request. Contact details Queries on the consultation should be sent to: mentalhealthandvulnerablegroups@wales.gsi.gov.uk 21 P a g e

Data protection Responses will be seen in full by Welsh Government staff dealing with the issues included in this consultation. It may also be seen by other Welsh Government staff to help them plan future consultations. The Welsh Government intends to publish a summary of the responses to this document. We may also publish responses in full. Normally, the name and address (or part of the address) of the person or organisation who sent the response are published with the response. This helps to show that the consultation was carried out properly. If you do not want your name or address published, please tick the box further down this page. Names or addresses we blank out might still get published later, though this does not happen often. The Freedom of Information Act 2000 and the Environmental Information Regulations 2004 allow the public to ask to see information held by many public bodies, including the Welsh Government. This includes information which has not been published. However, the law also allows us to withhold information in some circumstances. If anyone asks to see information we have withheld, we will have to decide whether to release it or not. If someone has asked for their name and address not to be published, that is an important fact we would take into account. However, there might sometimes be important reasons why we would have to reveal someone s name and address, even though they have asked for them not to be published. We would get in touch with the person and ask their views before we finally decided to reveal the information. Responses to consultations may be made public on the internet or in a report. If you would prefer your response to be kept confidential, please tick here: 22 P a g e

1. Contact Details Your name: Clare Jenkins / Alyson Thomas Joint Acting Chief Executives Organisation (if applicable): Board of Community Health Councils in Wales (BCHCW) on behalf of CHCs in Wales Email address: enquiries@waleschc.org.uk Contact telephone number: 02920 235 558 Your address: 33/35 Cathedral Road Cardiff CF11 9HB 2. Are you responding as an individual or on behalf of an organisation? Please tick box. Individual On behalf of an organisation (please tell us which organisation) Board of Community Health Council in Wales (BCHCW) on behalf of CHCs in Wales 23 P a g e

3. Structure of the document In the Welsh Government s Programme for Government Taking Wales Forward 2016-2021 we confirmed we would take further action to make Wales a dementia friendly country through developing and implementing a national dementia plan. This commitment was also highlighted in the 2016-19 delivery plan supporting the Welsh Government s 10 year Together for Mental Health strategy aimed at improving mental health and well-being for the whole population. This is the first dementia strategy for Wales but builds on previous work. Engagement with people with dementia, their families and carers has been central to drafting this strategy. Feedback from stakeholders has informed the layout of the strategy, including organising actions as part of a pathway and embedding a rights based approach within the document. 24 P a g e

Question 1 The strategy follows the following themes: Risk reduction and health promotion. Recognition and identification. Assessment and diagnosis. Living as well as possible for as long as possible with dementia. The need for increased support in the community. More specialist care and support Supporting the plan: o Training o Research. Do you feel there should be any additional themes included? Please tick the appropriate box below. Yes No Partly Where you have ticked Yes or Partly, please explain what the additional themes should be. 25 P a g e

The Strategy Themes are well thought out and welcomed. There is a need to make support for carers (particularly crisis support), and recognition of their vital role an explicit theme in itself. The Board of Community Health Councils in Wales recently undertook an engagement exercise titled One Simple Thing that asked what one simple change could improve the quality of NHS dementia care. We received over 500 responses, mainly from carers. The responses highlighted the need to support Carers in their role of maintaining dementia patients in the community for as long as possible. Lack of access to timely crisis care was seen as the breaking point for many. Our engagement also revealed a need for more information and support at diagnosis, with both the patient and the carer struggling to cope with the practical and emotional implications of being diagnosed with dementia. This formed such a large element of the response that the CHC movement believes that information should be a distinct theme of the Strategy. 26 P a g e

Question 2 Within each theme we have identified a number of proposed key actions. Do you feel these are the right ones? Please tick the appropriate box below. Yes No Partly Where you have ticked No or Partly, please provide an explanation and any alternative suggested wording below. Please state which theme you are commenting on. The CHC movement believes that the key actions are good starting points. No Strategy document can set down all the complex and detailed actions needed to implement these proposals and it is right that individual LHB s should take responsibility for engaging with local populations, Local Government and the Third Sector to map the way forward. The proposal to publish information on services would meet the needs of carers who tell us that they struggle to find what is available to them following diagnosis. The This is Me book is also welcomed but some carers tell us that where this initiative is already implemented, some staff clearly have not read it and provide care that does not accord with the patient s expressed wishes and preferences. This is an issue for training and development. We strongly commend the proposal that Local Health Boards should ensure that every newly diagnosed person with dementia receives an information pack in an accessible format and is offered access to a dementia support worker or equivalent. The CHC movement recommends that this be extended explicitly to carers. We believe that this initiative is so important that LHB s should be required to publish their performance on this requirement. 27 P a g e

Question 3 The strategy describes what services should be available for people and their families and carers to live well in the community for as long as possible. What do you think are the key features of this type of service? What do you think are the key features of this type of service? Availability at levels sufficient for local needs Accessibility Timeliness Flexibility to meet diverse individual needs Genuinely valuing the role of carers and making real efforts to support them Joined up a multi-agency team approach to providing care Recognising the problems of rurality Respect Responsiveness to crisis these events seem to be a key factor in carers losing the ability to cope any longer. A crisis team that can respond to events when they happen was regarded as vital by our respondents Wider approach to the difficulties of living with dementia many of our respondents reported that managing every aspect of their lives, domestic, social, financial, became more difficult and their ability to cope reduced as the illness advanced 28 P a g e

Question 4 Within the final Together for a Dementia Friendly Wales we would like to include examples of notable practice. If you have any which you would like to highlight, please do so here. Please explain why you think it is an area of notable practice e.g. an evidence base, an achieved accreditation award. The examples shown are excellent and it is the experience of the CHC movement through our engagements, visits and monitoring of local services that there are many other examples available. The issue, as in so many services, is one of consistency. We also see many examples of poor practice; this was highlighted in our recent Lonely in Hospital report. We suggest that NHS Wales actively collects and disseminates a guide to best practice. 29 P a g e

Question 5 Within the document we have highlighted the advantages of using telehealth, telecare and assistive technologies to help people live more independently and safely within their own home. What do you think the challenges and barriers are in making this happen and how could you overcome these? The CHC movement s Lonely in Hospital report looked at the use of digital communication in relation to older people. We found that many NHS staff believed that older people do not use and are not comfortable with digital communication. Older people told us a very different story. Many older people use smartphones and tablets extensively and would welcome increased use of technology in their care and to communicate with caregivers. The Mid-Wales Healthcare Collaborative has led the way on telehealth and shown how well received it can be particularly in rural areas. 30 P a g e

Question 6 Do you think the key actions will provide a positive impact for people based on the following protected characteristics:- Disability Race Gender and gender reassignment Age Religion and belief and non-belief Sexual orientation Human Rights Children and young people Yes No Partly Where you have ticked No or Partly, please explain why. The Board of CHCs welcome these actions unreservedly. 31 P a g e

Question 7 Do you think the key actions will provide a positive impact on the opportunities for use of the Welsh language? Yes No Partly Where you have ticked No or Partly, please explain how you feel the opportunities for using Welsh could be strengthened to ensure it is treated no less favourably than English. This is a vital element of the Strategy. One of our respondents reported that the last months of her husband s life was transformed by the involvement of a Welsh speaking nurse as Welsh was the language through which this couple had lived their lives. 32 P a g e

Additional Comments We have asked a number of specific questions. If you have any related issues which we have not addressed, please use the space below to comment. Our recent engagement exercise revealed a great sense of injustice that the burden of the cost of dementia care was treated differently from other diseases. Set out below is a comment typical of the many we received: In 1944, the NHS said that people s illness should be paid for from the cradle to the grave by the NHS the NHS won t pay for Dementia, although it is an illness. There is a tax on Dementia, but not on cancer or heart disease. 33 P a g e

Many people looked to the Scottish system as being the way forward for Wales. There was also a perception that funding for dementia care was very limited and consistent reports of people being unable to access services that were listed as locally available. Support for carers and respite care was an often expressed need from our respondents and they wanted a 24 hour crisis response team they told us that the small hours of the morning were often a very difficult time and that it was often impossible to get advice, reassurance or help at this time. Respondents spoke of a lack of respect and dignity for dementia patients; Show respect. Respect the fact that these are people who have had lives and are now ill. Do not put men and women in the same areas. Do not expect them to eat or drink without encouragement. Do not write them off. My mother has dementia and I am shocked at her treatment by the NHS and social services. It was recognised that on most occasions this was caused by time pressures or lack of awareness but many carers found it difficult to cope with on a continuing basis and called for staff to be given more time with patients and more training. 34 P a g e

8. Sources of information The final document will include a list of useful sources of information. If there is anything you feel should be included, please state in the space below: Older People in Community Hospitals: Avoiding Boredom and Loneliness (December 2016) (Community Health Councils in Wales) One Simple Thing: Ideas to improve the NHS for people living with Dementia (April 2017) (Community Health Councils in Wales) 35 P a g e

Contact us Abertawe Bro Morgannwg CHC 1st Floor, Cimla Hospital Cimla, Neath SA11 3SU 01639 683490 Aneurin Bevan CHC Raglan House, Llantarnam Business Park Cwmbran NP44 3AB 01633 838516 Cardiff and Vale of Glamorgan CHC Unit 3, Pro-Copy Business Centre Parc Ty Glas Llanishen Cardiff CF14 5DU 02920 750112 Cwm Taf CHC Unit 10 Maritime Offices Woodland Terrace Maes-y-Coed, Pontypridd CF37 1DZ 01443 405830 Hywel Dda CHC Suite 5, First Floor Ty Myrddin Old Station Road Carmarthen SA31 1BT 01646 697610 North Wales CHC 5 Unit 11 Chestnut Court Ffordd y Parc, Parc Menai Bangor LL57 4FH 01248 679284 5 North Wales CHC is the operational name of Betsi Cadwaladr Community Health Council 36 P a g e

Powys CHC Neuadd Brycheiniog Cambrian Way Brecon LD3 7HR 01874 624206 Board of Community Health Councils in Wales 3rd Floor, 33-35 Cathedral Road Cardiff CF11 9HB 02920 235558 www.communityhealthcouncils.org.uk Accessible formats If you would like this publication in an alternative format and/or language, please contact us. Our publications are also available to download and order from our website. 37 P a g e