Be Inspired! Shirley Ayres Consulting

The simple answer is yes. This conclusion was prompted by one of the many emails I receive asking for help and advice. With the writers consent and personal details changed I will be publishing our correspondence and the discussions I have with relevant care organisations over the next few weeks. Finding a specialist dementia care home which exemplifies best practice is a serious challenge which is being confronted by an ever increasing number of people who care for older relatives and friends. 

My parents belief in social justice has been a guiding force in my professional and personal life. The care they received at the end of their life was important to me, my family and our friends. With over thirty years experience in the care sector I was able to navigate and understand what often seem to be very complex systems and information. I hope that these  posts will help the many people confronting a similar dilemma about finding good quality residential care for people who have been affected by Dementia and Alzheimer’s.  

 I am currently developing the Click Guide to Personalisation which brings together online resources for professionals supporting adults receiving care services. For the benefit of carers, relatives and social entrepreneurs developing new services, the Guide will now include further information about how adult social care services work, and the roles of the various national, regional and local bodies.

Dear Shirley,

I am the sole carer of my mother who suffers from Dementia with Alzheimer’s.  After several years of caring for her in her own home I find myself physically and emotionally exhausted and in my forties I can see the rest of my life mapped out for me if I don’t take action now.  I am looking for an outstanding home to care, engage and love her. I have explored all publicly available sites for information but only two places have inspired me in their approach which are Spring Mount in Bradford and Merevale near Birmingham, both of which are full to capacity and have waiting lists.  Those homes that I have visited do not cut the mustard or are protectionist and will not signpost me to good practice elsewhere.  So I am hoping you can help.
My mother is in good physical health, is involved in daily tasks of life and living and is a creative, gentle spirit.  We live in London but ultimately I’m willing to place her outside London if this ensures she gets the best possible care and am willing to travel.
I do hope you can help to sign post me in the right direction. If you are unable to do so, perhaps you know of someone who can help me, with unbiased information that I can research further? Its a mine field and I’ve discovered that the CQC rating is a pile of crock.  In helping me you will go a long way to supporting my duty of care towards my mother, who you can imagine is the most precious person in my life and who deserves the best care possible.  She is Asian too so any culturally specific places could be worth exploring.  I’ve looked at a few in XXXXXXX which are very institutionalised.

Kind regards and in anticipation,
K

Dear K,
Thanks for your email and I understand the challenges you are facing. My mother had dementia, she was precious to us all and we loved her dearly. We fought long and hard to find the right home for her when she could no longer be cared for at home. In my experience the care provided is very dependent on the manager and we eventually found a place for my mother at XXXX (NB The name of the home has been deleted following my discussions with the Care Quality Commission which will be reported in the next post). A brilliant home with a committed manager and an excellent example of best practice. We did have to fight with the local authority who were more concerned about a single room being available and the cost rather than the philosophy and approach underpinning the care.
 
I believe that as our knowledge and expectations increase about what is appropriate care for people with dementia we, as a society, have to challenge inadequate and bad practice. But I also see the potential for conflict with the budget cuts being used as an excuse for justifying the lack of improvements which need to be addressed by strong leadership, staff training and supervision.
 
I would have recommended Spring Mount in Bradford and Merevale near Birmingham but since they were highlighted in TV programmes I guess it is understandable that they now have long waiting lists. Have you been in contact with the national charities representing people who have dementia and carers?
 
You may have picked up that I am a keen advocate of the potential of social networking to improve care standards. With your consent and without identifying you or your mother I would like to post the content of your email across a number of professional networking forums and on my website to highlight the issues you raise in your email and to see what homes would be recommended. Do let me know whether this is an idea you would be happy for me to pursue.
 
As a matter of professional curiosity can I ask why you contacted me?
 
With all good wishes
 
Shirley

I would really welcome feedback about the issues raised in this post, recommendations for care homes which provide “person centred” dementia care and thoughts about any websites which provide an “Amazon” style ratings system locally, regionally, nationally or internationally.

About Shirley Ayres Consulting

Tags: Alzheimer’s, care homes, care quality commission, choice and control, Click Guide to Personalisation, dementia, personalisation, social care, workforce development

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Watching the second part of “Can Gerry Robinson fix Dementia Care Homes?” it was painful to acknowledge the vulnerability of people with dementia.  This was balanced by the visionary leadership shown by Anne Fretwell and the commitment of the staff at Merevale House. The home has an inspiring focus on person-centred dementia care and a passion for empowering residents by providing opportunities to live their lives with meaning, dignity and respect.  (photo credit Merevale House)

The issue of inspired and passionate leadership is a challenge for the whole of the care sector. There is an urgent need to develop strategic performance management systems which will drive quality and improve care services. A very clear message from the programme is the importance of education and training for staff. Fortunately there are an increasing number of  accessible and free specialist training resources and my previous post identified a number of online resources. I would also recommend the innovative Social care TV dementia videos

Dr Carol Komaromy, a senior lecturer in health studies and one of the Open University academic advisors to the programme, writes: “People who live in care homes for older people are often hidden from the public view. Coping with the complex care demands of people with dementia requires a high level of skill and compassion and yet carers are often underpaid and the value of what they do remains unrecognised. The programme highlights the need for specialist training and the difference this can make to the experience of living with dementia. It is a sad indictment of society that providing care resources for people with dementia seems to have a low level of priority. More than this, as the series shows, there is so much more that could be done even within limited resources.
“I would argue that a culture of care would need to support paid carers in a direct engagement with the needs of people with dementia and recognise that they are also people with diverse emotional needs who need to feel supported and valued. While it is clearly the case that protocols and resources need to be in place for this to happen, homes need to shift to a culture of care that places people with dementia at the centre. A key element in making this happen is education and training.”
The Open University has produced a free leaflet, Dementia Care: Sustaining The Person Within, to accompany the programmes. It lists the help and support available when making decisions affecting the care of people with dementia and can be ordered through the following link 

The Commission for Social Care Inspection provided the first public benchmark for quality in care homes in what had been a largely unregulated sector. I hope that the Care Quality Commission (CQC) recognises the important role of the care homes inspectorate and provides the resources to strengthen their role and extend their remit. Since staff are the biggest cost and the most vulnerable to cutbacks is it time for a review of the CQC regulatory requirements for staffing and qualifications? An equally urgent question is whether local authorities should refuse to place residents in dementia homes rated as “poor or adequate by the CQC.

In this digital age I believe that all care homes should have internet access for resident and staff. The SCIE get connected investment project for adult social care is distributing £12 million to registered providers of adult social care in England to assist them with their information, communications and technology. They will focus on providers who do not have good access to the internet. The initiative is to allow those who use, visit or work in adult social care services to benefit from the learning, knowledge and access that the internet can bring.

In the next 20 years over a million of us will have dementia, we need a serious debate about our expectations and aspirations for the care which will be provided to one of the most vulnerable groups in society. 

Part Two of “Can Gerry Robinson fix Dementia Care Homes?”  can be seen on BBC iplayer 

Telling Tales About Dementia – Experiences of Caring which is edited by Lucy Whitman explores how it feels when someone clsoe develops dementia? How do you cope with the shock, the stress and the grief? Can you be sure that you and your family will receive the support you need? In Telling Tales About Dementia, thirty carers from different backgrounds and in different circumstances share their experiences of caring for a parent, partner or friend with dementia. They speak from the heart about love and loss: ‘I still find it hard to believe that Alzheimer’s has happened to us,’ writes one contributor, ‘as if we were sent the wrong script.’ The stories told here vividly reflect the tragedy of dementia, the gravity of loss, and instances of unsatisfactory diagnosis, treatment and care. But they contain hope and optimism too: clear indications that the quality of people’s lives can be enhanced by sensitive support services, by improved understanding of the impact of dementia, by recognising the importance of valuing us all as human beings, and by embracing and sustaining the connections between us.

Tags: alzheimer's disease, be inspired, dementia, education and training, families, Leadership and Management, older people, social care, vulnerable adults

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