I was very sad to read that Jimmy Hill has been diagnosed with dementia. There has been much press coverage about the fact that his wife and solicitor are joint power of attorney for his financial affairs. Several comments from the family have been published which suggest that as a result of this financial arrangement they have been cut out of the decision making process when it comes to their father’s care however, this should not be the case. A health professional should consider the opinions of the children in their parent’s care needs and living arrangements if the children are keen to have a conversation about those matters. Certainly NOT having power of attorney for finances and property should not be any issue, the attorney facilitates the payment for services, the attorney does not dictate the nature of those services, nor should they. Good care decisions are based on the best interests of the person with dementia and anyone who loves that person has the right to have their views heard and considered.
After a quiet summer everything is starting up again for the Autumn: I am speaking to Westminster Memory Service next week and Admiral Nurses next month (all our talks are advertised on our free App which you can find in your App Store or on iTunes searching for Dementia SOS). Next week I am also attending a seminar with Harriet Harman who is going to be talking about how government policies can support women who are working and looking after a relative with memory loss -the ‘sandwich generation’ Pathways Through Dementia is also keen to help.
We have been lucky enough to attract the support of Stone Rowe Brewer solicitors who sponsor our App, Greenacres Nursery in Hampton Hill who have chosen us as their charity of the year, Mark Green of St James’ Place Wealth Management who is sponsoring our Newsletter, and Nigel Bunner who is a local musician with personal experience of dementia who is raising money for us at his gig in Kinston Upon Thames on October 11th:
www.sugardrum.com
Thank you for visiting this Blog, I hope that it will continue to be useful for people.
Sara
This month Carers UK published the results of a survey undertaken with 3000 carers titled ‘State of Caring’. Here is some information and statistics from that survey which highlight why our work to support carers through our talks and seminars is so important:
“Caring is becoming part of life for more and more of us as our ageing population and the fact that people are living longer with disability and ill-health brings changes to family life.
Our survey of carers looked at a wide range of issues affecting carers and their experiences to build a picture of the current state of caring, reflecting wider social, economic and political trends.”
“Of carers responding to the survey:
Over half (56%) of carers who gave up work to care spent or have spent over 5
years out of work as a result
More than 4 in 10 (44%) of carers surveyed have been in debt as a result of caring
84% of carers surveyed said that caring has a negative impact on health
The difficulty of juggling work and care came out clearly in our survey; nearly two thirds (65%) of carers in work have used annual leave to care while nearly half (47%) have done overtime to make up for taking time off to care.”
More evidence that we need to empower people with information about planning ahead and help people prepare for a future that may involve caring responsibilities.
The Daily Mail reports today that a man who has dementia has decided to go to Dignitas. The assisted dying debate is frought with ethical dilemmas and moral difficulties but it is important to focus closely on the messages that organisations such as Dignity in Dying are trying to convey: the Mail article mentions the possibility that this man’s decision will exert pressure on other people with dementia to kill themselves, which I would challenge. Any assisted dying laws would be introduced for people who have the mental capacity to make a decision to die, and are living with a condition so depressing they feel they have no quality of life any more. This is not necessarily people who are disabled, or old, or having memory problems, it is people living under what they consider to be intolerable circumstances. Once we start mentioning putting pressure on people, implications for disabled people etc we are drawing in a group of people who in fact stand outside the debate. But the more we do the more nervous they will become that they ARE a part of the debate. We celebrate disability and old age in an evolved manner nowadays, let’s not undermine that by extending a discussion about assisted dying to those who are living happily with their disability or age.
Since Christmas I have been working with our Trustees to register our charity with the Charities Commission. In addition to this we have developed an App and are in discussion with a national firm of solicitors who are interested in sponsoring it. Thirdly, after a wonderful year with the Athena Network I was in two minds whether to renew our membership as we have to be so careful with our money at the moment. The support that I have received from the women at the Twickenham group has been amazing and truly inspirational so I was very reluctant to leave. However, Susan Green of Greenacres Nursery Hampton Hill has offered to pay for Pathways’ membership for the next year. Athena has therefore hosted a Christmas fundraiser for us, linked me to the solicitors firm that may sponsor our App, provided us with a generous donation to renew our membership with the network, in addition to ensuring I am giving more talks and reaching more people in this area. Thank you Athena!
The concept of the Deprivation of Liberty Safeguards was being considered when I first started working directly with the laws that concern our client group, so I will always have a particular fondness for them! For the first time, legislators were recognising the fact that we should not force people into care homes or any other environment when they are protesting loudly against that decision. Of course it was not satisfactory to section all these people under the Mental Health Act so they were falling into the ‘Bournewood Gap’, a phrase named after the court case that highlighted the issue. The Safeguards provide a system whereby the best interests of the person are assessed and recorded before a decision to deprive them of their liberty is formalised.
The Safeguards were formally introduced in 2009/10 and a recent NHS Centre report reveals the following about where we are today (taken from Journal of Legal Action Group February 2013):
There has been a year on year increase in the number of applications completed for deprivation of liberty safeguards since they were first introduced.
Dementia accounted for 53% of all applications.
The East Midlands had the highest rate of applications at 51 per 100,000 whilst London had the lowest rate at just 17 per 100,000.
When I have time (!) I will post some information about the cases that have come to Court since 2009 which are often the best indicators of how a new law is developing in practice.
My Legal Action Group magazine, in an article on continuing care, suggests the following:
“Potentially it is useful for both PCTs and those advising individuals wishing to challenge eligibility decisions to check their local eligibility patterns. Unusual patterns may well indicate problems with local processes and policies which need to be addressed.”
The Department of Health publishes the eligibility rates for each PCT at the moment (please note that PCTs vanish next year to be replaced by Clinical Commissioning Groups).
Clearly one of my New Year’s resolutions must be to update this Blog more regularly! When I had my first Trustees meeting we agreed not to set any targets for the year as such and thought we would see how the year panned out. It has gone really well with me delivering 7 talks to different groups – already we have two more booked for next year and one PTA interested in booking us which could lead to many new contacts.
I have had the pleasure of speaking to the Women’s Catholic League Richmond, Mael Gael Community Centre Southall, the Mother’s Union Guildford, Age UK’s outreach team in Westbourne Park, the staff of the Tower of London (private tour of the crown jewels afterwards was a real bonus!), Alzheimer’s Society Dementia Cafe Hammersmith and Alzheimer’s Society Dementia Cafe Greenford (where my daughter made an impromptu appearance when the babysitter couldn’t make it – an early introduction to the joys of Lasting Powers of Attorney can only be a good thing…). I have also spoken to various people on the phone and via email.
Not only have the Trustees kept me motivated and encouraged but I must also thank the women of the Athena Network Twickenham who often keep me sane! They also offer brilliant advice, not least the woman who told me to change my original tagline which was ‘Training in dementia and the law’. I will never forget what she said: ‘Listen, no-one likes training, people fear the law and dementia is depressing’ So I changed the tagline to something a bit more positive!
For 2013 I hope that the training course I attended and the advice of Richmond CVS will help me to procure grants and sponsorship to increase our advertising capacity and perhaps, one day, pay me a salary. Either way, I am sure I will meet many more amazing people with dementia, their carers and professionals and am looking forward to it,
Sara
Last week I visited the Mael Gael community centre in Norwood Green near Ealing. 100 people attended, mostly Punjabi speaking so the services of a translator were required to help me convey an overview of dementia and the legal aspects of caring for someone with the illness. Although I have heard the majority of questions asked in one form or another, there is often a new query and this time someone asked whether the family home could remain forever in the family if the children stayed there after their parents had gone into care. I said a charge would be placed against the property and when the children moved out and the house sold, the local authority would take their money back. However, this lady was insistent that the family home would remain occupied by future generations. I had to concede that if that was the case then technically the house might never be used to repay the care home fees!
We also spent some time clarifying the role of the attorney appointed by a power of attorney form as opposed to the executor of a Will – the first only acts when the person is alive, the second only acts when they are dead.
After the talk I had the most beautiful curry for lunch and then was shown around the amazing Mael Gael centre – 7 acres of land and projectssuch as the free IT courses and a tranquil carers’ garden.
Two weeks ago I gave a talk at the Whitton Holistic and Well Being Exhibition where I met some great people – Raj Garcha from the Mael Gael community group in Norwood Green who has booked me for a talk on July 25th, Yasmin from Ethika Productions who is considering making a film about dementia, and Leigh and Togo from ‘Me Organic’ who are keen to get a team of cyclists together to undertake a sponsored bike ride to raise money for us!