Growing old my way A review of the Impact of the National Service Framework (NSF) for Older People in Wales January 2012 This publication can be provided in alternative formats or languages on request. There will be a short delay as alternative languages and formats are produced when requested to meet individual needs. Please contact us for assistance. Copies of all reports, when published, will be available on our website or by contacting us: In writing: CSSIW National Office Communications and Facilities Manager Government Buildings Healthcare Inspectorate Wales Rhydycar Bevan House Merthyr Tydfil Caerphilly Business Park CF48 1UZ Van Road CAERPHILLY CF83 3ED Or via Phone: 0300 062 8800 Phone: 029 20 928850 Email: [email protected] Email: [email protected] Website: www.cssiw.org.uk Website: www.hiw.org.uk Joint Inspectorate Website: www.inspectionwales.com ISBN 978 0 7504 6771 4 © Crown Copyright 2011 WG13866 Contents Foreword 1 Dad’s story 3 Executive summary 11 Chapter 1 Introduction and background 19 Chapter 2 Health promotion, well-being and prevention 23 Chapter 3 Maintaining independence at home for as long 37 as possible Chapter 4 Maintaining independence while in hospital and 53 ensuring that people are not discriminated against because of age Chapter 5 Conclusions and next steps 67 Appendices 71 i ii Foreword It gives us great pleasure to introduce this report that looks at whether the National Service Framework (NSF) for Older People in Wales1 has achieved the changes and improvements to services for older people across Wales that were intended when it was introduced in 2006. Due to improvements in medicines, technology and working and living conditions people are living longer. According to recent figures, people aged 50 or over in Wales account for 37% of the total population, while those aged 60 or over make up 24%2. In comparison, in 1961 only 18% of people living in Wales were aged 60 or over, while those aged 80 or more accounted for just 2% of the total population, compared with a figure of 5% today3. The NSF was introduced in recognition of the growing number of people living past the age of 50 and the need to ensure that they are provided with the health and social care that they require to support them to live a longer and fulfilled life. The NSF is a key strand of work to arise from the Strategy for Older People in Wales, published in 20034. The Strategy emphasised the importance of engagement, participation and empowerment of older people and the importance of enabling older people to live their lives as actively and independently as possible in a suitable and safe environment of their choice. A key concern highlighted very early on in the planning and scoping of this review was the increasing numbers of people who have dementia and the widespread view that ____________ 1 The National Service Framework for Older People in Wales, published by the Welsh Government, March 2006. 2 Mid-2007 population estimates for UK, England and Wales, Scotland and Northern Ireland. United Kingdom, Office for National Statistics website. August 2008. 3 Mid-year population estimates 2007. Welsh Government, Statistical Directorate, StatsWales website. August 2008. 4 The Strategy for Older People in Wales 2003-2008 Published by the Welsh Government November 2003. 1 often dementia is not diagnosed early enough and appropriate treatment is often not given. Such were the concerns that we decided to look at the application of the standards set out in the NSF through the 'lens of someone with dementia.’ We are extremely grateful to all those people over the age of 50, service users, carers and relatives who helped us to compile this report by openly sharing with us their thoughts, views and experiences. Some had very sad stories to tell about their experiences and frustrations in accessing services, others had nothing but praise for their local services. We hope that all those we spoke to will recognise their input and stories from the findings and recommendations we have made in this report. We have started our report with ‘Dad’s story’ a true account of a family’s recent experiences. We hope it will encourage all who read it to stop, think and ask questions. We hope that the information set out in this report will be of interest not only to those responsible for providing care to older people, but also to individuals and their families who are or could be in need of health and social care services in the future. Not one of us can escape the ageing process but we can and should be supported to age with dignity and in the way that we choose - ‘our way.’ Peter Higson Imelda Richardson Chief Executive Chief Inspector Healthcare Inspectorate Wales Care and Social Services Inspectorate Wales 2 Dad’s story Dad was in his early seventies when he first started to show signs of something not being right. He got emotional and upset over things that he would normally have just let go over his head. At first his GP put it down to depression, however his symptoms got worse - it wasn't so much his memory loss but his hallucinations and what my mother called the night horrors where he would wake up confused thinking he was back working ‘down the mine.’ After a while he was referred for a mental health assessment and for some reason a man who had worked hard all his life, brought up four children and held down responsible jobs was diagnosed as being bipolar. My sisters and I couldn't believe this and challenged it; he had never drank to excess, never gone on wild splurges and we who had lived with him all our lives were totally taken aback. How could such an assessment be made? I watch the cine films of our childhood holidays, of Christmases and days out, there is no way on earth that my father was bipolar. Over time the usual signs of dementia got more frequent. He would wake up not knowing where he was and forget what he had just done. He was referred to the local memory clinic and following a series of assessments was diagnosed 3 with Lewy Bodies dementia5. Dad was allocated a Community Psychiatric Nurse (CPN) and Mum was referred for counselling. The local Alzheimer's society provided wonderful support and Mum and Dad went on days out and attended the Alzheimer's Cafe. Also twice a week Paul came to take Dad out for the afternoon; he loved these breaks and became very fond of Paul. Things were ticking over just fine and with the support of the Alzheimer's society Dad had been supported to put arrangements in place for the future, including giving family members Power of Attorney. In October 2009 Dad was asked if he would go into hospital for two weeks so that he could be properly assessed and his medication adjusted. We were upset when we left him on the day of his admission as the ward was clinical and not the friendly and therapeutic environment we expected. Even Dad’s individually wrapped Werther's Originals were confiscated to the kitchen, apparently an infection risk. Patients sat around in one big room and during Dad’s stay we never saw the newly refurbished patients’ sitting room open. We only saw it being used for meetings. During the first week of his stay Dad told us that he found it difficult to have a conversation with any of the patients and commented that he was fed up of watching many of them just walking up and down the corridor. Sadly, by the second week Dad had joined them. ____________ 5 Dementia with Lewy Bodies (DLB) is a form of dementia that shares characteristics with both Alzheimer's and Parkinson's diseases. It accounts for around ten per cent of all cases of dementia in older people and tends to be under-diagnosed. 4 We were devastated as he had walked into hospital two weeks earlier after having just returned from a holiday in France, he was relatively fit and well and to those who didn't know him he showed no signs of dementia. As the weeks progressed he got worse, he developed a stoop and we noticed that he had started to dribble, he cried when we took him back to the ward after a walk in the grounds. Almost all lucid conversation had stopped and he started to exhibit behaviour that was just not him; he was incontinent and got aggressive when he found that he could not leave the ward. Due to him having toppled the wardrobe in his room and dismantled his bed on more than one occasion all possessions and furniture were removed from his room. It was devastating to see him in this environment. From the start of his decline we as a family queried whether it could be his medication. The staff said we had to accept he was deteriorating, when my mother asked about having him home she was told that he needed nursing home care with at least two carers looking after him at any one time. We couldn't accept this - how could he have gone down- hill so fast? We asked for a list of all his medication and found that he was on atypical antipsychotics and a cocktail of tranquilising medication including diazepam and triazepam. We then began to research the internet accessing the Royal College of Psychiatrists site and NICE guidelines. We were horrified to see the 5 possible side-effects of all his medication and specifically the dangers of using atypical antipsychotics on someone with Lewy Bodies.