What do you think makes a care service 'excellent'?

Take part in research or give your opinion in a survey.
We know from carers and people who use services that they want an easy way to know whether the services they want to use or do use are good quality. Some have found the star rating system, carried out by the Care Quality Commission (CQC) who regulates care, to be helpful. This system is being replaced and your views are needed to help build the new system.

The Social Care Institute for Excellence (SCIE), a charity, has been asked to look at what make up excellent regulated services. We welcome your views on:

* what makes a service "excellent"?
* what sort of evidence would CQC ask the organisation to provide?

SCIE's research carried out so far shows that an excellent care service is one that, as well as meeting essential standards of quality and safety:

* makes it possible for people to have control over big decisions about their life and small day-to-day choices. They should also be able to play a key role in how a service is run
* supports and encourages people to have good relationships with their partners, families, friends, community and care staff
* enables people to do activities that they find important, enjoyable and meaningful
* has good systems and practices in place to regularly check that people achieve the three outcomes above

1. Are the four elements we have focussed on the right ones to describe an excellent service? If not, what else should we focus on?
2. Will this work for all types of service, for all people using services and for carers or, if not, what changes should we make?
3. How important are organisational factors - such as quality assurance, continuous learning and improvement?
4. What evidence will show that a service is excellent in addressing the four elements - or other areas that you suggest should be covered.

I look forward to hearing your views. These will help us shape the definition and I will be happy to let you know how things develop.

Carolyn
My son - aged 16, who has Downs Syndrome - uses the "In Control" system of direct payments, and it achieves all these objectives, very dramatically. For example, he started off attending a local boxing gym with his paid befriender, but now he attends by himself and is made to feel very welcome. In Control has acted as a stepping stone to enable him to access mainstream services and to be included. And today he started work at a local printers - a paid job for a few hours a week supported by ESF and a Cornerstones support worker. He attends college three days a week, 9-4. Another example, tomorrow he is going to the theatre in Glasgow with a peer-volunteer to see Joseph and the amazing technicolour dreamcoat - his second trip to the theatre in less than a week. As his circle of support expands, he relies less on formal services, and makes greater use of volunteers and family friends. His social worker is thrilled by his progress and increasing confidence.

In Control is currently paying for his (mainstream) swimming lessons, a young support worker at £5 an hour, ski lessons with Disability Snowsport UK, and a range of state of the art acessible technology such as his beloved iMac - and has helped him visit Egypt and New Zealand in the past 18 months with unpaid volunteer escorts. Using conventional services the sum he receives would pay for just four weeks a year in a children's residential respite home in Motherwell. And what's more, I can programme the support to enable me to go out and work, earning a decent wage p/t and paying taxes. So: Which approach do you think represents better quality?
Pic: Jay with one of his peer-support workers on a day trip to Edinburgh. A picture tells a thousand words. How much more evidence do you want?
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More photo-evidence, if required...
X-country skiing across a frozen loch in Scotland with a paid peer-support-worker: Feb 2010
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Canoeing in New Zealand: July 2009
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Examining heiroglyphs in the Valley of The Kings, Egypt, May 2010
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I'm a parent-carer. I don't like formal services very much: I don't like quality control either and I don't play management games: I merely help my sons magical dreams to become reality through the power of imagination. It's a lot less hard work than it sounds, and it is very rewarding. "In Control" rocks.
Thank you Excalibur. Your son's story is really positive and inspirational. I have heard people say how much they value the flexibility that direct payments have given them, enabling them to be more aspirational about how they live their lives.

The big challenge we have is defining what makes an excellent service is in capturing the aspirations of such a wide range of people in very diverse circumstances - from younger adults with a range of disabilities and mental health issues to people in later life, many of them living with dementia. We also need to consider regulated activity in residential and domestic settings (care homes, adult placements and home care).

From your note, it sounds like the key elements of quality for an 'excellent' service that we've suggested are about right - choice and control over decisions, positive relationships and meaningful activities. In your son's case, you say the service he gets 'very dramatically' helps him achieve these outcomes.

How can an 'excellent' regulated care service help people using services and carers to be more aspirational about how they live their lives?

Carolyn
Direct payments are useless for us. Our severely physically disabled son needs two workers and the budget they will allow for direct payments comes in at £155 a week short of what he actually needs. It is a way for SW depts to give care "on the cheap" and put the hassle of becoming a small business on to people who are already severely stressed. The ILF which was supposed to "top up" the DP's has now effectively been withdrawn from those who need it most. (Not accepting new applicants and disabled people must be working 16 hours a week to qualify) They are thus penalising those who are most severely disabled and need the help most for daily living

Eun
How can an 'excellent' regulated care service help people using services and carers to be more aspirational about how they live their lives?
Carolyn
Well, I would suggest that the main threat to regulated services achieving these objectives is institutionalisation, creeping or rampant. Regulation spawns standardisation and "equity" and inhibits individualisation and choice, so my view is that regulation is actually in direct conflict with quality.

But, assuming that regulation is inevitable in most statutory funded services, then it should focus soley on monitoring and encouraging excellent outcomes as defined by the client and carer, not on controlling inputs or prescribing processes.
Hi,

We have found autonomy to be at the top of the list. Our service has tried to force us into decisions and tried to enforce a timetable putting my partner into 1/2 hr boxes. It was ridiculous. Autonomy is key - the ability to shape the service for your individuals needs, not according to some outdated care plan. Let the patient achieve what they want. Let the patient and family be in charge of making the decisions. By all means bring in experts to sanity check, but let the patient shape their care.

Something I have never seen done - let the patient/family know their choices. What is available, what can/will happen. We were completely in the dark, had no idea what to expect or what was going to happen to us throughout the whole process and have done ALL research ourselves. Often the experts seem completely out of date with what is available. Until you know, you don't know, so patients return home completely clueless. I'd advise - speciality packs according to services and disabilities or needs or audience. Lists, names, numbers, websites. We didn't even know who was who within our care team or who was responsible for what. We still don't even know what sort of care system we are under. We have just worked out it is not person centred and it is institutionalised. We still have no idea if there are other options open to us, like opting for direct payments and organising it ourselves.

On-going training and competency scoring. So often we have found experts to be out of touch with new research and better methods of doing things. Often we have researched our own best advice because of this, or employed privately. NHS experts seem to be far behind the private market, which a few exceptions. Training also seems to be front loaded and not continuous, or challenged for that matter. Sometimes we have found training has advised carers to do something a way that has had a detrimental effect, and another expert has advised the opposite (this always happens). Training needs to be calibrated and sense checked for consistancy. And again - get the patient/family input.

Families/patients don't care about equity of service or all the other stresses of the care managers. Staff need to not impose their objectives onto patients as their objectives are very different. Whilst the service needs to be transparent, the responsibility needs to rest firmly with the care team.

Non judgemental positive regard - services could learn a lot from counselling practise. Too often we have been bullied and judged openly with no evidence. Feedback of any kind needs to be evidence based. That counts for complaints. Answers to complaints are again non-evidence based, so it just becomes a case of he said she said and is a dire problem in the NHS.

I have loads of ideas swilling around my brain, so feel free to get in touch.
Direct payments for us, work well BUT we are ONLY ALLOWED to spend the money on CARE HELP, ie assistants' wages and advertising for such.
We are not allowed to use DPs to pay for wheelchair insurance, hoist maintenance, car insurance (hubby's ONLY form of transport) and maintenance, holidays (we are NOT allowed to claim for these) or any other such things which non-disabled people enjoy and which other areas of the country, allow the disabled to use DPs for.

This is definately a case of 'depending where you live', as to whether DPs allow you to claim for such things, Excalibur is very lucky that they can use their money on all the things that they do with/for their son.

We are currently in discussions with NHS and local council about who pays for hubby's continuing health care and care packages. We do not use agencies any more, but recruit qualified and experienced PAs ourselves and pay them on self-employed bases, using DPs. The NHS are now saying that THEY should be paying for it, but won't completely give us the total money we need for this. It HAS BEEN PROVEN that the way we 'buy' our care (the PAs) and the amount that we spend of our DPs (wages) is FAR CHEAPER THAN ANYTHING WHICH THE NHS/COUNCIL/SOCIAL SERVICES can come up with. So, if everyone says that we are managing hubby's care in such an efficient, economic way, which works terribly well, then why are they trying to take it away from us by not giving us the (cheap) funds we need?
AND the Individual Budget system isn't in practice in Shropshire and for the foreseeable future, never will be.
This is definately a postcode lottery in care funding.
They allow us a certain amount of money and then want to claim the surplus back every April at the end of the financial year. It is unspent surplus, because we are not allowed to spend it on things other than PA wages, yet they are quite happy to give us loads more than we actually spend and then forbid us to make full use of it. So, we give back all the surplus, which they are happy to give us each month in the first place? I don't understand why we cannot use the surplus for more beneficial things for hubby. If we spent it all on PA wages, they wouldn't want it back and wouldn't think anything unusual in that.
Many thanks to those carers who contributed to SCIE’s work to define excellence in adult social care. I thought you might be interested in finding out where this work has got to. We have submitted our definition of excellence to the CQC, along with reports on the engagement activities of which you were a part. Whether they attended one of our events, shared ideas with us online or in informal discussion or shared their experience when we visited services, we think the definition has been really enhanced by the input from carers. Hearing about your experiences has also been valuable to me, more broadly, in my lead role in SCIE to promote service quality in social care.

We understand from CQC colleagues that a date has not yet been set for the formal consultation on the new quality information system, of which the definition of excellence is a part. If you would like to keep in touch with developments or add further comments, please contact me through this forum or by e-mailing carolyn.denne@scie.org.uk and we'll let you know when the CQC consultation begins. Thanks you again for your help.