Category Archives: Co-production

Family Of Woman With Down’s Syndrome Denied Intensive Care Seek Answers From Covid-19 Inquiry | Same Difference

While we all hold the NHS in great esteem for all it does and the great staff it employs, it does not mean that it could be better and do much more.

Even though some funding is and has been available for the NHS and other health related services, this funding does fall well short of what is really required, especially when the increases in the UK population are accounted for and the degrees of complex needs and other health related conditions are taken into account.

Some health facilities are more short of funding than others, especially mental health and when this is coupled with the severe lack of funding for social care and some areas of public health, it does show the considerable short fall that the NHS is experiencing. Indeed, even with all these shortfalls the services are still expected to come up with savings, when in re

However, the Government is never held accountable for their lack of funding and the onus is always carried by the NHS when there are no areas where savings can be made, without cutting existing services even further

The Government is causing these dilemmas, but not accepting responsibilities.

Everyone appears to agree that ‘do not resuscitate’, DNRs) should never be considered without consent of each individual and, in many instances their families, especially when there are areas of lack of capacity with the individuals. But, as we can see this consent appears to be, in many instances, ignored by the NHS. To ensure consent is always the priority it, unfortunately means, that the legal aspects should be considered, but that is a costly exercise, especially now that access to legal aid has been more difficult to obtain, due to changes through Government actions.

This creates a great degree of loss of equality rights and this again is due to the current equality legislation being totally inadequate. Again a result of Government actions or more correctly inactions.

Yes, the NHS should be held accountable, for lack of resources should not be an excuse to restrict peoples rights, but in addition the Government and the respective Ministers also need to be made accountable, which they never are.


Source: Family Of Woman With Down’s Syndrome Denied Intensive Care Seek Answers From Covid-19 Inquiry | Same Difference

Autism is not a mental health issue, yet I was sectioned | Metro News

This is how it is and I hope in time, it will be how it was.

Yes, it is well before time that the Mental Health Act was was revised and the White Paper is a start, but not a finish. Even when, I hope the White Paper progresses to an Act, it will not be a finish for this needed to be reviewed regularly, that is until everything should be as it should be.

But time does not stay still and neither should progress, for it should always be looking to improve, but no, not ever, to regress to how it was.

Autistic and and learning disabled people need to be listened to for their eventual actions are just another method of communication and it is not their fault that others observing the communication fail to understand it.

Autistic and learning disabled people are not at fault and to some respects not the persons failing to understand the communication, but it is the system.

It is as though the system is in charge, when it should not be, for systems should be there to be challenged and not relentlessly followed.

But at times it is believed to be easier to follow than to challenge and this has to be changed, for challengers to systems should be welcomed and not be resisted.

For there needs to be a system of transparency and not of secrecy.

Secrecy leads to frustration and frustrations leads to violence, but it is the violence which is then dealt with, when it should be the secrecy.

As I have said looking to change the Mental Health Act is a start, but the main area that needs to be looked at are systems wherever these systems are. What also needs to be considered when systems are looked at is that it is not be looked at by just including the so called, experts, for we are all experts in one way or another and the best expert, ‘experts by experience‘ should be the main people to be included. These experts by experience should not be looked at as an addition to the process, but need to be an integral part of the process and be equal to any others present. They should also be there at the start of the process, well before they are any preconceived opinions formed. This is co-production in process and should be followed in all areas of change or any formation of systems.

I truly hope in the changes to the Mental Health Act that it is changed for the better and not the worse, but that will depend on how it is reviewed.

Unfortunately, it appears that, in the main, experts by experience are included on a consultation basis, when it should be on a co-production basis. For to get changes for the worse and not better for the persons to whom the system will be imposed on, will only make the lives worse for them and will be costly in both money and time as well as very bad outcomes for the persons it is being imposed on to.



Source: Autism is not a mental health issue, yet I was sectioned | Metro News

Teenager’s death after being given antipsychotic was ‘potentially avoidable’ | UK news | The Guardian

I welcome the result of the Oliver McGowan independent review  as this tragic event could have been avoided, if the health professionals had seriously listened to Oliver McGowan and his family.

But, for many years the health professionals have used the opinion that they are the sole experts and persons with no medical training do not have to be listened to.

Also, the medical authorities and professionals tend to stick together and support each other, no matter what has occurred, be it right or wrong or not easy to determine.

They also, spend millions of health funding in defending the actions of the medical profession and thereby less is available for actual health procedures.

While it is good to support each other, when it is clear to those who are open to other opinions, then surely this is a misuse of funding and time.

Yes, unfortunately, mistakes will and do occur, but these mistakes should be there to improve the quality of health and not to maintain the ‘status quo’, so that the same mistakes can occur indefinitely.

It would also help the anguish of the relatives  of the party to whom the actions had been related to and could well help them through a very difficult time, instead of continuing to keep the memories of the tragic results fresh, when all they wish for would to be follow the grieving process and not to extend and increase it.

I do feel that the medical profession is changing for the better and include, to some extent, the patient and family, but there is a very long and winding road to progress along and some in the medical profession are still extending the road. This is a very slow process but the chinks of light are encouraging.

My heart and thoughts go out to the McGowen family at this very difficult time.




Source: Teenager’s death after being given antipsychotic was ‘potentially avoidable’ | UK news | The Guardian

Whose responsibility is adult social care? Is it the family? Is it the state? | Care Industry News

Whose responsibility is the care of older adults? Is it the family? Is it the state? Is it the older person herself? How should we respond ethically to the needs of an increasing older population with fewer younger people available to deliver care?

These and other related questions were the focus of a three-day research meeting at the University of Surrey. The meeting is part of an international networking project funded by the Wellcome Trust and is led by Professor Ann Gallagher at the University of Surrey and Dr Michael Dunn at the University of Oxford in collaboration with Professor Yonghui Ma, Professor Zhaoxu Xu and Professor Ya Fang from Xiamen University, China.

The research meeting focussed on case studies developed by the team relating to residential and home care in China and the UK. The case studies focused on ethical challenges for older people and families in negotiating roles and responsibilities. Commentaries were invited from experts across 11 different countries including from the UK, Hong Kong, Singapore, Canada and the USA. During the three-day networking meeting, experts discussed the case studies and broader issues of philosophy, policy and practice as they concern the future of caregiving for older adults in different parts of the world.

Day two was devoted to public engagement, with local caregivers and family members joining with the group of international experts to share their perspectives. The international group had the opportunity to learn about one of the best places to age in the UK with a visit to historic Whiteley Village. The day ended with an innovative immersive theatre performance by the Entelechy Arts Company. This performance enabled international experts and the public to engage with the question ‘Whose responsibility is the care of isolated elders?’. The company is recognised for its pioneering programmes of work supporting the creative and social inclusion of isolated older people.


Source: Whose responsibility is adult social care? Is it the family? Is it the state? | Care Industry News

Letting adult social workers get back to what matters : Community Care

In November 2017, 60 adult social care workers in North Devon arrived for a training day that marked a fresh direction for them, their service and adult social care as a whole.

The topic of the day was the solution-focused approach. It’s been more commonly used in children’s social care for years but until then it had rarely been used with adult services.

“As far as we understand, we’re the only adults service to roll solution-focused approach out in social care,” says Vicki Baker, Workforce Development team manager for Devon County Council’s adult services. “The idea of using it came from our previous Principal Social Worker. She had learnt and used the skills herself as a social worker. It offers workers skills to work in a strengths-based way and she therefore persuaded senior management that it was something worthwhile for us to explore.”

Helping people cope better

The basic idea behind a solution-focused approach is that it creates conversations of possibility and hope in order to facilitate positive change. By focusing on what’s working and the progress already made, amplifying strengths and resourcefulness, and believing in the competence and potential of the person, this facilitates the conditions for them to work out their own answers and ways to meet their desired outcomes.

Take working with a carer as an example. “So with somebody who’s perhaps struggling with caring for a loved one, we might get them to think about what their preferred future might be and what a good day would look like,” says Vicki. “We try to get them to imagine a time when they felt they were coping better. It’s about trying to get people to draw on their own coping resources and strategies to make a positive change in the present time.”

After the reported difference it made to people during its pilot run of the approach in North Devon, the Council embraced the concept fully with a full evaluation planned. Now, it’s in the final stages of rolling out the approach to every practitioner in its care management service.

Energised social workers

The feedback from social workers to the approach has been great, says Vicki. “One social worker wrote on their evaluation that it felt like they had got back to their social work roots, and that something clicked in their head and they believed in it” she says.

“There is research which suggests a Solution-Focused Approach can increase workplace morale and I’ve certainly seen our staff feeling more energised than perhaps they were previously. I think that’s because the Solution-Focused Approach is based on what conversations help people to make a change.”


Source: Letting adult social workers get back to what matters : Community Care

Carer Voice (Working Together)

Some 3 years ago I and 2 other Learning Disability Family Carers agreed to help a University of Sheffield student with her thesis for her PHd. A post was created on one of my other blogs 61chrissterry re the initial stages of this project where we used the principles of Co-production and the post can be found here.

Since that post was issued we met regularly and we analysed the information obtained from the various workshops at our event on 20 October 2017. From this analysis we eventually created a number of documents which we all felt would improve communications between Learning Disability Family Carers and the range of Service Providers.

In order to ensure the documents we created could be used we met with a range of service providers.

Initially we arranged a meeting at Sheffield City Council with Learning Disability Commissioners and representatives of Sheffield Adult Social Services, who viewed the documents and suggested some minor alterations for our consideration.

We then had a similar meeting with some home carer and Supported Living Service Providers, who also made some minor alterations for our consideration.

Over a few weeks we considered the suggestions mentioned from these 2 meeting and made adjustments accordingly.

By this time a meeting had been arranged with some representatives from Sheffield Clinical Commissioning Group and at this meeting they asked if they could use these documents with their ‘For Pete’s Sake’ campaign they were launching, to which we agreed.

In addition they offered us a 15 minute presentation slot on their ‘Assisted Technology event on the 28 June 2018. While our documents had nothing to do with assisted technology we did accept their kind offer and did attend their event and gave our presentation.

The presentation being presentation-for-ccg.

To view the documents we produced, these can be found here.

Chris Sterry produces his own Newsletter at least on a monthly basis should you wish to receive this please email Chris on







How Carer Voice was Started

3 Family Carers of relatives with Learning Disabilities and/or Autism (Chris Sterry, Judith Gwynn and Kate Chapman) started working together with a PHd student (Rachael A Black) at the University of Sheffield (Department of Human Communication Sciences) using the framework of Co-production. This was initially to provide research for Rachael’s thesis required for her PHd, but also to have a meaningful outcome for LD Carers within Sheffield, UK

At the start of this co-production Rachael enquired through Sheffield Mencap & Gateway for carers of persons with Learning Disabilities to work with her on her PHd project. During the last 18 months we have had regular meetings at the University of Sheffield on how we would proceed with this project and what our initial outcomes would be. Initially through general discussions, which Rachael was recording, it became clear that the recurring situations was around carers communications with the range of Service Providers. Within the context of Service Providers it included Sheffield Adult Social Care through Sheffield City Council, various health providers ( being GPs, Sheffield Teaching Hospitals, Community Health, and many other health areas) together with the independent Care Providers including charities, voluntary and private independent providers.

So that we were not restricted around our own views we decided to create 2 surveys, 1 to be completed by LD carers reflecting on their interactions with Service Providers and the other survey to be completed by Service Providers reflecting on their interactions with LD Carers. The surveys were created on Survey Monkey and during their creation we had a number of meeting to discuss how these were to be formed, the number of questions to be included and the specific questions. When we were all satisfied with both surveys they went live on Survey Monkey and electronic links were disseminated through our various range of contacts within Sheffield, UK.

We also discussed how we wished to to use the information from these surveys in addition to the original outcome for Rachael’s thesis. and decided we would wish to do this in a form of a presentation. We looked at possible dates and venues and obtained costings and also viewed each venue and then using co-production decided which venue to book and how we would advertise the event and provide a means for LD Carers and Service Providers to book to attend the event, which we did through Eventbrite and agreed on a format for a flyer and a website (Carer Voice) and the event title being Carer Voice Working Together.

Working Together Event Presentation 2017


Carer Voice ‘Working Together’, The Presenters from left to right, Chris Sterry, Judith Gwynn, Rachael A Black and Kate Chapman

Carer Voice ‘Working Together’, Presenter Rachael A Black Stating the Principles of Co-production

Carer Voice ‘Working Together’ Carers and Service Providers working together

Carer Voice ‘Working Together’ Presenter Judith Gwynn answering questions at the end of the Presentation

Carer Voice ‘Working Together’ Presenter Kate Chapman answering questions

Carer Voice Final Notes

Thank you for coming today and now you have seen the presentation and been involved in the workshops in which carers and service providers have worked together. This is how it should be for we are all here for the same reason, to ensure vulnerable persons, be they be our relatives or not, have provision to ensure their needs are met and they can then led their own lives.

Communication is but one key, but an extremely important key and without it all that is there can fail.

With this in mind I facilitate a support group LD Carers Butty Group, also known as Central group or Butty Group, where there is also a website LD Carers Butty Group and a mailing/distribution list. There are other support groups and details of these can be obtained from the Carers Centre and from Cathy and Kirsty from Sheffield Mencap & Gateway (Sharing Caring Project).

If you wish to be included in the mailing/distribution list please advise your email address. While this was produced with carers in mind, it does not mean that service providers cannot be included. Information sent will include areas relating to disability both local and national as well as notes for the support meetings.

Lunch is now ready and there are some leaflets from a selection of providers please view and take away and continue to network throughout lunch.

Do not forget to put on a post it the message you are taking away from this event and an evaluation form will be emailed to you, please return with your comments.

Our thanks to

University of Sheffield, Department of Human Communication Sciences for funding the event

Sheffield Central Fire Station for the room

Healthwatch Sheffield for the pens

Carer Voice ‘Working Together’, Chris Sterry giving the closing statement


After the Carer Voice : Working Together event we sent the following email to everyone who attended the event and also to those persons who could not attend but did express an interest in the event.

“We just wanted to get in touch to give you an update on the work we are doing following the Working Together Event in October.

 As a group we have met once to go through the feedback and will be meeting again in December. Where we will start drafting some standards and guidelines for communication between family carers and providers of service based on the information you gave us.  

 In early 2018 we will email these to you for your feedback. If you would not like to receive these emails then please do let me know and I will remove your name form the mailing list.

 We are also planning to pull together a small working group in the New Year to ensure the standards are accessible and practical. If you would be interested in being in this group, please do let us know. It will consist of 2 to 3 meetings at the University of Sheffield.

 Please also find attached some information about care workers in the independent and charity sector and the flu vaccine which we hope will be of use to you.

If you would be interested in receiving a copy of the presentation we gave on the day please do get in touch and I will send this to you.

Many thanks

Rachael and Carer Voice”

Flu Vaccine for Care Workers

Supporting People with Learning Disabilities get Flu Injection


We have now met in December and have started drafting some standards and guidelines for communication between family carers and providers of services based on the information given to us during the Carer Voice : Working Together event.

The draft documents were produced.

So we could enage with service providers we held 3 meetings.

Intialy we met with  representatives of Sheffield Adult Social Carer and Sheffield City Council Commissioning who viewed the documents and made some comments regarding some minor alterations.

The second meeting was with some service care providers who also made some contructive comments.

The final meeting was with representatives of Sheffield Clinical Commissioning Group, who also welcomed the documents and wished to use these in conjunction the their ‘For Pete’s Sake’ campaign’ and offered us a 15 minute presentation slot in the Assistive Technology event on the 28 June 2018.

Chris gave the presentation at the event and it was very appreciated by the atendees.

The presentation can be viewed  here