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New report warns of looming incapacity crisis

2nd July 2018

  • 98% of people in our area leave important health and welfare decisions to chance
  • By 2025, more than 13 million people who are at risk of mental incapacity will not be prepared
  • 66% would like a family member to make medical and care decisions on their behalf, in the event of mental incapacity
  • 77% haven’t discussed end of life medical and care wishes
  • 32% admit to having made no provisions at all, such as a will, LPA, pension or funeral plan
  • Coalition of partners join forces to warn of ‘incapacity crisis’ led by SFE, including Baroness Ilora Finlay, Alzheimer’s Society, Dying Matters, Age UK, Anchor, and SOLLA 

A new report from SFE (Solicitors for the Elderly) and independent think tank, Centre for Future Studies, reveals the UK is leaving medical and care preferences to chance. The report looks at the ever-increasing number of people living with dementia which, combined with the failure to plan ahead for mental incapacity, exposes a looming crisis. 

The study found 98% of people in our area have not made necessary provisions, should they lose capacity from conditions like dementia. 36% admit to having made no provisions at all for later life, including a will, pension, funeral plan or LPA.

In response, a coalition of organisations, led by SFE - the specialist organisation that connects older and vulnerable clients with legal experts in older client law - are joining forces to encourage people to tackle the taboos around end of life planning, in order to prevent an incapacity crisis. 

The research found that 72% of people in our area are worried about dementia and losing the ability to make decisions for themselves, but 77% have not spoken about, or even considered, personal medical and care end of life decisions. 

Planning ahead is surrounded by worrying misconceptions, especially in relation to health and care preferences. 

A staggering 67% of people in our area incorrectly believe that their next of kin can specify what they would have wanted if they are no longer able to and 66% believe their spouse has the power to do so. 66% of the people in our area would like a family member to make medical and care decisions on their behalf, but this is not the case. These decisions are out of a loved ones’ hands if a registered health and welfare LPA is not in place. 

58% believe that being on the NHS organ donor register ensures that organs are donated following death, however this is not the case. It’s crucial for people to discuss organ donation preferences with family and friends, otherwise it may not happen.

Without the necessary provisions in place, potential life-changing medical and care decisions are taken away from loved ones.

There are currently 928,000 Health and Welfare LPAs registered with the Office of the Public Guardian (OPG) across England and Wales, compared to the 12.8 million people over the age of 65 who run the risk of developing dementia – a difference of nearly 93%.

The forecast shows the disparity will continue, leaving millions in limbo. By 2025, it’s calculated that 15.2 million people will be at risk of mental incapacity and it’s estimated that 2.2 million health and welfare LPAs will be in place. This shows that the health and welfare wishes of 13 million people will not be taken into account. 

Only 2% of people in our area surveyed by SFE have a health and welfare LPA in place.  

SFE is urging the nation to act now to avoid this incapacity crisis by planning ahead in case of mental incapacity.

 

It is crucial to have a conversation with loved ones in order to make specific medical and care wishes known – such as, where you are cared for, whether you wish to be an organ donor and whether or not you would want to be resuscitated – otherwise there is a risk your preferences are not taken into account.

The campaign calls on people to act now and start a conversation with loved ones about end of life topics to remove the stigma surrounding the discussion. 

 

Lakshmi Turner, Chief Executive of SFE, said:  

“Most of us do not like thinking about, let alone talking about, death, disability or disease, despite the fact that it touches all our lives – but it is essential that we do so.

“Whilst it’s great that more and more of us are putting wills in place and establishing plans for finances and assets, far too few of us are planning ahead for our health and care needs and wishes, leaving this to chance.

“It’s time to set the record straight. Planning ahead by talking to family or friends shouldn’t be seen as doom and gloom, it’s about having a positive conversation about welfare, empowering your loved ones and making the decision-making process easier for everyone.”

 

Professor Ilora, the Baroness Finlay, states:

“With decades of experience working and campaigning around palliative medicine, the low numbers of health and welfare lasting power of attorneys is of concern. 

“When a person loses capacity to take decisions, it is sad to see families and professionals struggling to try to determine what a person would have wanted. Delays and distress can be avoided by appointing someone to speak for you when you can no longer speak up for yourself.

“Discussing medical and care wishes ahead of time ensures that care can respect an individual’s wishes, with the respect they deserve – even when it comes to fulfilling wishes after death, such as organ donation. 

“It’s important to have an open discussion about future illnesses and possible incapacity. I urge the millions of people who haven’t given loved ones the opportunity to listen, to act now.”

 

Jeremy Hughes CBE, Chief Executive of Alzheimer's Society

“We welcome this initiative. Lasting powers of attorney for health and welfare too often get overlooked.

“People with dementia have the right to make choices about their care, just like anyone else. Making someone they trust their attorney for health and welfare is one of the ways people can do this. A health and welfare LPA provides reassurance to them and the act of creating one can start useful conversations about the future with family and friends.”

To download the report, a short video and infographics, visit sfe.legal/the-incapacity-crisis-a-nation-unprepared/

 

Notes to editors

  • The report titled The incapacity crisis: a nation unprepared was produced by SFE in June 2018. Further research was conducted by Centre for Future Studies.
  • The consumer polling was commissioned by SFE in March 2018, which polled 1,977 adults across the UK. The figures have been weighted and are representative of all UK regions (aged 18+)

 

About SFE

SFE (Solicitors for the Elderly) is an independent, national organisation of over 1,600 lawyers, such as solicitors, barristers, and chartered legal executives, who provide specialist legal advice for older and vulnerable people, their families and carers. 

The main areas of law members cover are:

  • Powers of Attorney
  • Making a Will
  • Living Wills/Advance decisions
  • Tax planning
  • Asset preservation
  • Trusts
  • Probate
  • Paying for care
  • NHS Continuing Care Funding
  • Will disputes
  • Court of Protection
  • Elder abuse

In order to be a fully accredited member, lawyers must have a minimum of three years’ experience advising in areas of older client law and have completed the Older Client Care in Practice Award – a qualification which demonstrates the specialist client care skills that enable lawyers to advise and support older and vulnerable clients.

Members are also required to continuously update their knowledge with training and produce an annual statement of competence, which ensures they maintain their expertise.

Clients of SFE members can also be reassured by the SFE code of practice and safety of redress through the members’ regulatory bodies, should something go wrong.

For more information about SFE or our members, please visit www.sfe.legal or call us on 0844 567 6173 to find an SFE member near you.

 

What is a Lasting Power of Attorney (LPA)?

An LPA is a powerful legal document, which allows a person (or ‘donor’) to choose one or more individuals (known as attorneys) to handle their affairs in the event that they are no longer able to do so themselves, for example if they lose mental capacity. Attorneys are usually trusted family members or friends, but people can also select a legal professional as their attorney. 

An LPA must be put in place while a person has the mental capacity to do so. It’s important to plan ahead and get your wishes down on paper as early as possible to ensure that whoever you choose to manage your affairs can retain control, should you lose capacity.

There are two types of LPA: a health and welfare LPA (H&W LPA), and a property and financial affairs LPA (P&F LPA). The former covers things like choices around care plans, medical treatment and end of life wishes. The latter deals with the management of property, other assets, bank accounts and bill payments.

Supporting quotes from selected partner organisations – please see report for additional material.

Gary Rycroft, Chair of the Dying Matters Forum

“We have long been advocates of the health and welfare lasting powers of attorney. End of life treatments can be uncomfortable and upsetting – for both the person in question and their loved ones.

However, death and dying needn’t be a taboo topic. There is dignity to be found in dying, and one of the best ways of ensuring this is by specifying your wishes around how you would like to be cared for.

“Without a health and welfare lasting power of attorney, you risk having very personal choices being made on your behalf by people who do not know you – such a medical or legal professional. We support SFE’s campaign raising awareness of the importance of these documents.”

 

Additional quotes are available in the full report

About the supporting organisations

SFE’s report is supported by a number of organisations which represent and provide services for older and vulnerable people:

  • Action on Elder Abuse – Action on Elder Abuse (AEA) is a specialist organisation that focuses exclusively on the issue of elder abuse. Established in 1993 by a group of practitioners from health and social care, AEA addresses abuse within people’s own homes (whether by family, friends or paid staff), within sheltered housing, and within care homes and hospitals. To find out more go to: http://elderabuse.org.uk
  • Age UK – is the country's largest charity dedicated to helping everyone make the most of later life. To find out more, go to: https://www.ageuk.org.uk/ 
  • Alzheimer’s Society – provides information and support, specialist research to help create a lasting change for people affected by dementia. Advice available on a range of topics on: https://www.alzheimers.org.uk
  • Anchor – With almost 50 years of experience, Anchor is England's largest not-for-profit provider of housing and care for older people. Anchor has more than 100 care homes throughout England, offering a range of residential care and dementia care, enabling older people to get the best out of life. To find out more got to: http://www.anchor.org.uk
  • Dying Matters – is a growing coalition that aims to change public knowledge, attitudes and behaviour towards death, dying and bereavement. To find out more go to: https://www.dyingmatters.org/ 
  • Office of the Public Guardian (OPG)

The OPG is an executive agency, sponsored by the Ministry of Justice, to protect people in England and Wales who may not have the mental capacity to make certain decisions for themselves. All LPAs are registered by the OPG: https://www.gov.uk/government/organisations/office-of-the-public-guardian

 

  • SOLLA – (The Society of Later Life Advisers) was founded in 2008 as a not-for-profit organisation, to meet the need of consumers, advisers and those who provide financial products and services to the later life market. Its aim is to ensure that people are better informed about the financial issues of later life and can find a fully accredited adviser quickly and easily. To find out more got to: http://societyoflaterlifeadvisers.co.uk

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