Experts by experience make their mark

One of the key features of CQC’s themed review of learning disability services has been the involvement in the inspections of experts by experience– people with personal experience of these services as service users or family carers.

Putting service users at ease

Laura D Broughton and John Woodhouse have been involved in 26 of those inspections, with Laura taking part in seven and John 19.

Both had been recruited as experts by experience for CQC through a consortium of smaller and user-led organisations led by Choice Support. Laura said: “It was an eye opener for me to see other services and different structures. I hadn’t been employed before so this was a good opening for me and confidence building. I hadn’t been around people before who have ideas of disability but treat you as an equal.

John said: “It was a great opportunity to help user voices to be heard and an opportunity to speak to them myself when they might not have been comfortable speaking to others. In one place someone did speak to me one-to-one and the staff were astonished.”

Experts by experience had two days of training, but even so, there was still an element of stepping into the unknown. Laura and John have both used learning disability services, but neither had lived in residential care. As John put it: “I had a good idea from the work I do with VoiceAbility but didn’t know what to expect from each service – and things varied from service to service.”

He also found that the best method for him was to not always stick rigidly to the questions on the forms: “As I did inspections I learned to ask questions in different ways.”

Laura said she sometimes found it difficult to see why people were sectioned. “Having not had the experience of being in that situation myself was good – I could objectify it. But it was initially shocking. I learned to distance myself. I was shocked at the start, but it got better as it went on.

She said that most staff were OK, but some were a bit shocked at the idea of being questioned on their job as a carer or support worker by her and the language of one member of staff disturbed her when they said that to communicate with some patients staff have to ‘[try different things, like you do with a baby’.
“The idea that just because someone is non-verbal that they should be referenced like that was too much. We are all grown-ups and we have our difficulties but we have a right to be treated as grown-ups. Being referred to as a baby is too much.”

Both felt that they did notice things that might not have been seen by inspectors. For example, Laura said, one place had handrails on the stairs but only on one side. Because I have a weakness in my right side I would have needed rails on both sides.”
John said he found information was there, such as a safeguarding phone number or an advocate service, but [service users] were not always aware of it. One concern John reported to the inspection team manager regarded safeguarding. He spoke to one service user who was happy but not sure how to complain if they needed to. “Sometimes people might not feel safe and not know what to do.”

Both agree that service users probably felt more at ease talking to them. Woodhouse says, “In one place a service user started talking to me and the staff were astonished because they didn’t think he would talk to anyone. He wasn’t that happy with staff which may have been why he was more comfortable talking to me.”

John said he learned about services from doing these inspections. “I went in with an open mind, willing to listen and not judge. I was able to approach questions in different ways, or in some cases put the questions to one side and chat. I felt like an equal part of the team and I think inspectors appreciated the contribution we made”.

Unique insight provided by family carers

Julie Thorpe and Ted Goodman were recruited by the Challenging Behaviour Foundation (CBF) as family carer experts by experience to take part in CQC’s inspection programme of learning disability services. Audrey Giles from CBF, a family carer herself, also took part in inspections.

Family carers brought a unique insight to the inspections. CBF set out strict criteria for recruitment, wanting to ensure people not only brought the experience of how they managed their own relative’s support, but could work as part of team and had a real desire to change things for the better.

The carers had two days of training to prepare them for the inspections. The first was provided by CQC; the second, delivered by the CBF was also part of the recruitment process and included training in positive behaviour support, personalisation, use of physical and medical intervention, the importance of including family carers and working in partnership. This ensured that all experts by experience had a good understanding of what good support should look like.

All three agreed that the meaning of ‘choice’ was an important issue –choice is a vital ingredient of person-centred care. They acknowledged that it is difficult when people are perceived as not having the capacity to make choices, but there must be a balance. For example, can people help themselves to snacks? Who gets to change the channel on the tv?

As well as visiting the services being inspected, family carers contacted relatives of the people using the services to get their views. Julie said there were times when this led to “a cathartic outpouring for family carers who hadn’t been able to talk to people before”.
She felt the empathy and understanding of people who had experienced this type of care was vital: “it gives you the language and the understanding” to connect with other family carers. Ted agreed that families welcomed the principle of using experts-by-experience.
She said that she found some family carers express sadness and anger about the treatment their relatives had in previous placements. People had not complained because they feared making a fuss would have a negative impact.

A lot of carers were concerned about confidentiality and there was a fear of reprisals and sadness about previous places that were much worse than current placements. For relatives, the most important thing was that their family member was safe.
Julie said that carers tended to open up as the conversations progressed, with the issues for concern usually disclosed near the end of the conversation after a rapport and trust had been established.

She also commented that it was hard for carers to know what a good service looks like – carers talked about their relief that the place the person was in was much better than the terrible place they used to live in, even when they had some concerns about the current placement.

Ted talked about “the privilege of being talked to and having people opening up and sharing their lives with me. It was humbling. The sheer commitment from families was astonishing.”
Ted and Julie both commented on some of the contradictions that can make judgements about services difficult. For example, although by their nature assessment and treatment services are not meant to be long-term placements, some families don’t want their relative to have to move from somewhere they are settled to supported living, where they fear lack of support.

The attitude of staff was all-important. Julie says in some places there were “disinterested staff who don’t really like the people they are working with”, while in other she saw “wonderful staff who really care and have an empathy and a positive attitude”. Ted and Julie both felt that good will, caring and empathy were the most important staff attributes, more important than “the list of qualifications”.

Julie also thought that society needs to raise the status of the job – and recognise that people need to earn a living. She commented that many services charge extremely high fees for placements, but she didn’t see evidence of the money filtering down to the people using the service or the staff.

Julie and Ted both felt they added an important ingredient to the inspections. As Julie said: “I can’t say inspectors wouldn’t have understood so well but I feel that caring and having someone else care for someone you love is a very emotive and challenging issue for a lot of people, whether the person they love lives with them or not. We live it and know it and I think this may shine through the conversation.

“I think I added a fresh pair of sharp eyes from a prospective customer point of view – a critical friend to the inspection team.”

Ted said he was impressed with some of the care he witnessed. For example, staff sourced a virtually indestructible lap top computer for one service user who, while he benefited from listening to music on a computer or mp3 player, his behaviour led to him destroying such equipment. He’s now learning other activities on the computer. Another service had encouraged a service user’s artistic talents, to the point at which they had been exhibited locally and on the internet through their own blog.

Both family carers said they had benefited from taking part in the inspections. Ted valued the opportunity to meet other family carers and tap into new networks offering mutual support. He also said his involvement helped him update his own knowledge of current trends in services.

Julie said the experience had given her a greater understanding of the range of facilities and approaches, knowledge of specific outcomes expected and a knowledge of what a good home looks like – which may not be the same as a compliant home. Julie and Ted said they had excellent support from CQC and CBF and felt included as a useful part of the team.

Words Worth Reading can help you prepare for a CQC inspection, visit our website to see the services we provide.

Writing on cancer wanted for Glyn Harris Awards

Thanks to Writers online for this one...

Now in their tenth year, the Glyn Harris Awards recognise new writing and artwork about the experience of cancer.

One award category is for entries concerned with the experience of facing cancer; the other is concerned with the clinical work of healthcare professionals. Winners, one in each category, will each get £100 and a glass trophy. The winning entries will be posted on the CancerCare website.

Entries are welcomed in any medium. Written entries may be of any length up to 5,000 words.
The closing date is 30 April.

Website: www.cancercare.org.uk/glyn-harris-awards

Thinking of entering and would like some support? Visit the Words Worth Reading Ltd website to see how we can help you.

Final print edition of Encyclopedia Britannica is a sell out

The final edition of the Encyclopedia Britannica to be printed has almost sold out after a rush of readers tried to acquire their own copies of the 32 volume set at a cost of £1,195.  

The books have been the oldest continuously published reference source in the English language, and stockpiled copies of the final edition are already selling on Amazon for up to £2,500. "Particularly the week after the announcement, our sales staff were run off their feet," said spokesman Eoghan Hughes.

"It's sold much quicker than normal – we haven't seen sales like this for a long time," said Hughes. "But people have grown up with it – in the early days it was the mark of an educated household – and they wanted to get their hands on a piece of history, we think. It's looking like we will sell out – I imagine the remaining 800 will go very quickly."

Future editions of the Encyclopedia Britannica will only be available online, "I don't think we would go back to print on it, although we haven't suspended print entirely – just the 32-volume set," said Hughes. "In the distant future we might do a limited edition once a decade, but there are no plans for that at the moment," added Hughes.


Think you have a novel that could become as well known as the Encyclopedia Britannica? Have a look at the publisher packs we offer on our website.

Jules Verne first edition sells for £1,000

Thanks to the Guardian online for this one...

A rare first edition of a novel by Jules Verne has been sold for almost £1,000 by a charity shop in Aberdeen.

Five years ago, a first English edition of the same book by the science fiction writer, also donated to Oxfam in Aberdeen, sold for £975, breaking the shop's record.

The book, An Antarctic Mystery, was published in 1898 and tells the story of a journey around the remote Kerguelen Islands in the south Indian Ocean.

Marion Craigie, manager of the Oxfam bookshop in the city, said: "We're always looking out for rare items being donated to our shops, including first editions. It's great that this book has raised so much money." She said the sale had "boosted our confidence in the online market", referring to the launch of Oxfam's website last December.

Verne's tale, written as a response to a novel by Edgar Allan Poe, was first published by Sampson Low Marston & Co. It followed Poe's 1838 novel, The Narrative of Arthur Gordon Pym of Nantucket.

Verne is best known for his novels Around the World in Eighty Days, Journey to the Centre of the Earth, and Twenty Thousand Leagues Under the Sea.

Take a look at the Words Worth Reading Ltd website to see all the writer services we offer!

CQC publish second annual report on the Deprivation of Liberty Safeguards

Some care homes and hospitals are still not meeting their obligations on liberty safeguards, according to the CQC's second annual report.

The Deprivation of Liberty Safeguards (the safeguards) aim to protect people’s human rights in circumstances where they cannot consent to their care or treatment.

Since 2009, the CQC have been monitoring the use of the safeguards in hospitals and care homes as part of their broader inspection programme.

Key findings

• 8,982 applications to deprive a person of their liberty were processed, of which 50 per cent were authorised.
• Many services have developed good practice on the use of the safeguards, especially in involving people and their families in the decision-making process, but some were confused as to when restraints or restrictions on a person amounted to a deprivation of liberty.
• Between a third and a quarter of care homes had not provided their staff with training on the safeguards, and in some cases only the manager had received training.
• Most hospitals had held some training, but the proportion of staff involved ranged between 20-100 per cent.

To read more about the safeguards, the CQC's role and future plans by click here- Deprivation of Liberty Safeguards 2010/11.

To find out how Words Worth Reading Ltd can support you with all apects of your CQC documentation visit our website.

Open call for new books

An interesting one from Writers Online...

New Writing North has put out an open call for submission for new books by writers based in the north-east, Yorkshire and Humberside

Following three successful years in the north-east, this year's Read Regional campaign has been extended to include writers from Yorkshire and Humberside. The project will select a number of new books and promote them widely across northern libraries, bookshops and festivals.

Submissions are welcomed of fiction, non-fiction and poetry. Books may only be submitted by writers currently living and working in the north-east, Yorkshire and Humberside.

Books must be submitted by post. The deadline is 30 April.

Details are on the website: www.readregional.com

Think this could be you? Visit the Words Worth Reading Ltd website to find out how we can support writers of all genres!

CQC publish a review of support for families with disabled children

Families with disabled children say that they are waiting too long for mobility aids such as wheelchairs according to the CQC's review.

The review into the support for families with disabled children included 151 local area reports and a national report looking at how long families wait for critical services and the quality of the support they receive.

 

People taking part in the review also felt services were not joined up and did not work well together while many children and their families reported they had not been consulted about how their care was provided.

The CQC report that there appears to be significant disparity between the experiences of disabled children and their families, which is overwhelmingly negative, and the data supplied by primary care trusts.

Words Worth Reading Ltd now offer CQC packages that will be tailor made to you exact needs. Visit our website to find out more.

 

 

UCAS application system debate

UCAS have decided to scrap plans for a post-qualification application (PQA) system, but the debate won’t go away.

The Schwartz Report recommended a move to PQA in 2004, which involves students applying for university places with their actual grades. It has been argued that PQA would lead to a widening participation of people applying for university places and a greater fairness in places offered.

Sir Peter Lampl, chairman of the Sutton Trust, said: "Moving to a system where pupils apply to university with their actual grades is essential for improving social mobility." However, at the inaugural seminar of the Bridge Group, an association promoting social mobility through HE, members acknowledged that "whatever system is in place, the university application process will continue to pose challenges for disadvantaged students and those from non-traditional backgrounds".

Liberal Democrat MP Simon Hughes reported in July 2011 that PQA could allow universities to "target better students who perform well and come from difficult backgrounds or from areas which do not usually send young people to university". Hughes looked to universities in the US for inspiration, including Harvard University, which wrote "to every top performing 'minority' student in the country asking them to consider applying to Harvard".

Impact Magazine, run by students at the University of Nottingham, published a lead article by Ben James suggesting that PQA would lead to an increase in "quickly and poorly made decisions". It suggested that change was needed to "make the system more representative", but PQA was a false trail.

As it stands, predicted grades are not always used with necessary caution. Some of those with good grades who happen to miss their conditional places by a whisker struggle to find a place at all. As a report from BIS last year found, only half (51.7%) of all predicted grades were accurate, while 41.7% were worryingly over-predicted.

The Higher Education Policy Institute (HEPI), in response to the government White Paper, pointed out that applicants from comprehensive schools "were more than twice as likely to have had a predicted grade lower than they achieved", 11.2% of those who achieved an A grade not having been predicted to. HEPI concludes: "Even if PQA proves to be impracticable, a better understanding of the relationship between predicted and actual achievement would be valuable to those making decisions as to whether to make an offer as well as to those making the predictions."

So the debate continues, but whatever application system is in place Words Worth ReadingLtd can help you improve your chances of a university offer with a well written UCAS personal statement.

Lavinia Greenlaw wins Ted Hughes award 2011 for new work in poetry

Thanks to the Guardian online for this one..

Lavinia Greenlaw's "outstanding" sound work Audio Obscura, which sent listeners on journeys of discovery through Manchester Piccadilly and London St Pancras train stations, has won the Ted Hughes award for new work in poetry.

The prize, established by poet laureate Carol Ann Duffy, rewards "the most exciting contribution to poetry" over the last year. A drama documentary by Simon Armitage, an orchestral piece by Christopher Reid set in the first world war, and a sequence of dramatic war poems by Andrew Motion were all in the running for this year's award. Greenlaw's work gave its audience headphones and led them through the bustle of London St Pancras and Manchester Piccadilly train stations, listening to individual narratives. It was felt by judges to "fully capture the spirit" of the Ted Hughes award.

"Wandering through St Pancras and listening to Lavinia Greenlaw's Audio Obscura was an extraordinary experience of what poetry can do," said judge, sculptor and author Edmund de Waal, who was joined on the panel by the poets Sarah Maguire and Michael Symmons Roberts. "It was profoundly moving, an inward and private journey in a very public place."

Greenlaw, a poet and novelist, said she was delighted to win the £5,000 award. "I can't tell you how pleased I am, not only with a panel of such eminent judges, but that people recognise this as part of my body of work, not a diversion. It absolutely goes to the heart of what I do," she said. "[The judges] understood that, which is just fantastic. I did think people might think it was a sort of side show novelty, or some completely ungraspable conceptual self-indulgence. But I believe in it, in what it became, and am really grateful to the people who took me there, and to the judges who understood it was part of my poetry.

The concept for Audio Obscura, Greenlaw said, came from two places. "I'd done quite a lot of radio work so I was really interested in this format – the idea of only working with what people hear – but I wanted to take it out of the structure of a radio play. Then I have always been interested in the chinks and edges of perception, and how we make sense of what's in front of us. I wanted to really get at the relation between what we see and what we hear.

"Everyone in a station is in a state of tension," she said, "they're coming from somewhere or going somewhere. I really wanted to explore that state of tension. Everyone looks contemplative, and I wanted to explore their thoughts."

Her audience, she explained, was given a set of headphones and an MP3 player, and told to wander through the crowd. "You hear station noise so you forget you have headphones on, and the idea you're cut off goes," she said. "Then these voices start appearing. At first you think they're voices you're overhearing in the crowd, then you start to overhear interior monologues – some are quite painful and explicit, some uplifting."

She chose to write monologues by characters whom she felt there was a chance of people seeing. "I spent a long time coming up with situations you could map on to the people around you. So there's a teenage girl, waiting," she said. "Having recorded these monologues, which are more poetic than narrative, I broke them down. I wanted to get to the point where you could overhear enough to imagine the rest."

Thousands of people listened to the sound show, which took place at Manchester Piccadilly in July 2011 and at St Pancras in September and October 2011. Greenlaw said she would love to write a similar piece again. "I think it was such a clever thing Carol Ann Duffy did, that the award should be for new work in poetry," she said. "It recognises that we all want to work off the page, and to test the edges of what we're doing, and to explore what we are doing in other ways and in other forms."

The Ted Hughes prize was established by Duffy in 2009 and funded from the annual stipend the laureate traditionally receives from the Queen. Its previous winners are Alice Oswald, for her book Weeds and Wild Flowers, and Kaite O'Reilly for her verse translation of Aeschylus's The Persians.

Have a look at how Words Worth Reading Ltd can support you on your own writing journey with our Mentoring Services.

CQC's ‘Tell us about your care’ pilot project begins

The Care Quality Commission (CQC) have begun pilot projects with the Relatives and Residents Association (R&RA) and the Patients Association (PA).

The aim of these pilots – known as ‘Tell us about your care’ - is to assess how feedback received from people who use services, their families and carers, via these organisations can inform the CQC's regulatory work. The CQC also plan to report back to the organisations on any action they have taken as a result of people’s feedback.

The CQC have provided training to R&RA and PA staff to support them to recognise concerns raised by callers to their helplines which relate to the government standards they regulate against.

The CQC hope to learn from the pilots, which will run for six months, to help the improve the way they gather and use information from people who use services, their families and carers about their experiences of care.

For advice and support on your CQC registration visit our website and explore our comprehensive Health Services department.