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As you will recall, I was invited by Dallas Dixon, in America, to write a piece for his blog, on Elder Abuse. I would like to share this comment someone left on it-
‘Prevention begins with awareness. Books and articles like Suzan’s really do make a difference. How amazing that in the midst of her own pain of losing her mother, Suzan is reaching out to help others through spreading awareness about elderly abuse. I enjoyed reading this blog, and appreciate Dallas Dixon for making this information available.’  http://goo.gl/QavPgo

 

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I was invited by Dallas, over in the USA, to write a piece on Elder Abuse http://goo.gl/QavPgo

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A complete stranger, a reader, got in touch with me via my website.

‘Hello Suzan, You don’t know me, but I have read your book – ‘Beyond My Control: Why the Health and Social Care System Need Not Have Failed My Mother’ and wanted to tell you how much it has helped me.

My mother was in a care home and there were so many things that caused me anxiety and anguish about her care, I really didn’t know who to turn to at first, however, after reading the advice in your book I was able to get things moving.

There were so many issues we had to address that I was always expressing concern when things were not right for any of the residents, let alone my mother.  Eventually, they realised that I was not going to let them get away with bad care.  Again, we followed the advice in your book-we didn’t always visit at the same time or on the same day. And we saw different things happening, not all good!

I told the homes managers of my concerns. She was useless, so I did what you say in your book, I put my concerns in writing and I kept a copy. I thanked staff when they did well and told them when I knew [after reading your book] that things were not right, i.e. expecting mother to sleep on a wet, urine stained mattress [which smelt awful!] and be put to bed after tea time [although she didn’t always eat her tea, which meant she had to go right through until 7am the next morning to have something to eat]. She was put to bed at 6.30pm and lights out].

Similar to the good nurse in your book, this home had one excellent carer. She gave excellent care, empathy and understanding. She was with us at the end of mothers life having just completed a 14 hour shift, but didn’t go home as she could see that mother was nearing the end.

Thank you for sharing your story; it helped us at a time when we really needed it. The book helped my mother have a dignified death. Thank you. I am so sorry your mother did not have a dignified death. She would be proud if she knew what you were doing to help others. I will be thinking of my mother and your dear mother tomorrow, on Mother’s Day. I am shedding tears as I write. God Bless xx’

[Names omitted to protect identity].

My mum left me with a mission. A mission to ensure that no one will ever, ever suffer the way she did. A mission to get the message out there on what is good care and bad care and to raise awareness on how to report concerns if you or your loved one is receiving poor care, in a care home, nursing home, hospital or receiving care at home. ‘Beyond My Control: Why the Health and Social Care System Need Not Have FailedMy Mother’ is available in Kindle and Paperback and can be bought from various websites including:BMC jpeg

Amazon http://goo.gl/8wq4wo

My publisher’s website, Hammersmith Books ow.ly/uFIxW

4/5* reviews on Amazon ☆’Beyond My Control: Why the Health and Social Care System Need Not Have Failed My Mother’ ☆http://goo.gl/dYiXJl

But you know it’s not about how many copies is sold. It is about getting the message out there, so why not ask your library to get copies in

Beyond My Control: Why the Health and Social Care System Need Not Have Failed My Mother

ISBN no: 978-1781610282

 

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The Equality and Human Rights Commission found widespread human rights breaches in the home care sector in its 2010-11 review. It has now issued commissioners with a guide to improving this situation.

Many home care service users are having their human rights breached because of disregard for their privacy or dignity, tasks not being carried out by staff because of lack of time and inadequate support to eat or drink.

That was the conclusion of the Equality and Human Rights Commission’s 2010-11 inquiry into home care for older people, which attributed the failings in large part to commissioning practices that reflected a lack of understanding in councils of their human rights obligations.

It has published a guide for commissioners to ensuring the home care services they pay for respect and promote human rights, written in collaboration with the Association of Directors of Adult Social Services (Adass) and British Institute of Human Rights.

Here are some of the key messages from the guide.

What the Human Rights Act 1998 requires

As public bodies, all councils are bound by the Human Rights Act 1998, which incorporates the European Convention on Human Rights into UK law. The guide points out that many of the convention rights are qualified, meaning they can be restricted in the public interest or to protect the rights of others; however any such restriction must be a proportionate response to a genuine social need that has its basis in legal rules. Qualified rights include the right to respect for family and private life (Article 8 of the convention).

The guide suggests deciding that a person with dementia whose condition deteriorates can no longer be cared for at home would be a legitimate restriction of her Article 8 right if it is a best-interests decision that is compliant with the Mental Capacity Act and is a proportionate response to her health needs.

The guide also points out that councils have positive human rights obligations as well as duties – qualified or absolute – not to breach convention rights; these obligations, established by case law, include a duties to prevent breaches of human rights, take effective action to deter conduct that would breach human rights, respond to such breaches, for example with an investigation, and provide information and advice to people at risk of having their rights breached.

The duties to prevent and respond to breaches could provide the basis for a safeguarding investigation into alleged abusive treatment by a home care agency, for example.

What does this mean for home care service users?

The commission has developed a framework setting out the rights of home care service users that should be promoted and respected, drawing on the European Convention on Human Rights and the United Nations Convention on the Rights of Persons with Disabilities, to which the UK is also a signatory.

The framework comprises rights to dignity and security, including freedom from physical, sexual or financial abuse or neglect, bullying or disrespectful treatment; autonomy and choice, including self-determination and support for decision-making; privacy, including respect for personal space, correspondence and modesty; and social and civic participation, including maintaining relationships and participating in the community.

It says councils should apply this framework to the way they consult and involve service users, assess needs and contract with providers.

Service user involvement

The commission says engaging and involving service users in the design of home care is central to human rights-based commissioning, on the basis that this will promote autonomy and self-determination.

As examples of good practice, it cites an authority that trains older people as “citizen assessors” who talk to service users about their experiences of home care and feeds their findings into the commissioning process.

Getting providers on board with human rights

The guide praises councils who engage providers in adopting a human rights approach and a shared understanding of what respecting rights means. Some councils put on free or low-cost training on human rights in home care delivery to provider staff, which has led to providers understanding and accepting why commissioning managers set strict targets on practices that impact on human rights, such as late care visits.

It advises that commissioners include explicit human rights targets in their service specifications, invitations to tender (ITTs) and pre-qualification questionnaires (PQQs) for providers bidding for work, and recommends using the commission’s human rights framework for home care as a basis for this.

It advises including an opening statement about the relevance of human rights and the expectations on providers in this regard, and setting out service outcomes that are focused on protecting and upholding human rights.

It suggests PQQs should quiz providers on issues such as how far care staff have received human rights training and invite organisations to explain how they promote a rights-based approach in delivering care.

Move away from purely task-based approaches

It warns that service specifications purely based on delivering certain tasks, such as toileting, bathing or preparing food, are unlikely to result in services that achieve human rights outcomes.

It also advises incorporating human rights clauses into contracts. This should include specifying that care providers promote service users’ choice and control over their daily routine, such as the times they wish to eat, go to bed and get up.

It says the contracting of home care in short visits at specified times not chosen by the service user can put people’s rights to privacy, dignity and autonomy, under Article 8, at risk. This is in line with the government’s ambitions to end the contracting of short, rushed visits that compromise service users’ dignity.

Fair treatment of staff

The commission’s inquiry found that high staff turnover and low pay exacerbated threats to older people’s human rights, and the guide encourages councils to design contracts to ensure better terms and conditions for staff.

It cites positively a council that has introduced a framework agreement for home care providers that includes a “fair rate” of pay for staff, well above the minimum wage, with payments for travel time. This has resulted in fewer late care visits and, reportedly, lower staff turnover.

Using care reviews to identify human rights issues

The guide also advises using care reviews to identify human rights issues by asking service users how well their dignity, security, autonomy and privacy are being respected. This could include questions such as:

  • Do you get enough home care to do the things you want and need to do each day, and to do these things safely?
  • If you need help to go out to social events, do you get this if you want?

It cites a local authority that undertakes face-to-face reviews whose feedback is given to the quality monitoring team and informs provider risk assessments.

Source: Community Care

http://www.communitycare.co.uk/2013/05/23/how-commissioners-can-ensure-home-care-respects-human-rights/

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