Diabetic Pain and Cannabis

  • For:  Patients with painful diabetic neuropathy (Type I or II)
  • We are planning an NIHR grant application on use of CBD oil (derivative of cannabis but NOT euphoric) for pain and need small focus group to discuss acceptability of this and get views on the outcome measures being planned for the study
  • We first need to discuss by email or phone call within 8 weeks from now which is the deadline for the grant application
  • CLOSING DATE: 31st July 2019
  • MORE INFO?  Contact David Wynick  – d.wynick@bristol.ac.uk
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Family carers caring for a child with disability sought for one-off discussion

Closes 24th June

For: Family carers caring for a child with a disability

What: We are a group of researchers from the universities of Bristol, Bath, Exeter and Cardiff. We are holding a consultation meeting to help us plan research in the area of Suicide, Homicide, and Self-Harm in parent carers  (the SHuSH research network). We are interested in a range of perspectives, so you don’t need to have experienced self-harm or thoughts of suicide to attend.

When: A One-off discussion group to be held at 10am on Weds 3rd of July and expected to last 2 hours.  

Where: At the University of Bristol

Expenses: Travel costs will be reimbursed and refreshments will be provided during the group.

More information: Read more here

Please contact Dr Anna Sansom A.Sansom2@exeter.ac.uk to register interest and for further details.

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Parents of young children wanted for feedback on infection research

Closing date: Ongoing opportunity

For: Parents of young children. Experience of a similar role is not needed, and any necessary training will be given.

What: The Centre for Academic Primary Care (CAPC) infection team at the University of Bristol is working on a range of research projects to improve how coughs, colds, chest and other common infections are managed, and help the NHS ensure that children who need it receive appropriate treatment. There are various ways you could get involved with this research, including reading documents to make them more parent- and child-friendly, or attending a focus group.

When: Activities could be by email or in person. One of the projects has its first meeting in August, and others will start later, so please get in touch at any time to find out how you could be involved

Where: Meetings will be held either at CAPC, in Clifton, Bristol, or somewhere that is convenient for you

Payment: Public contributors are paid £15-25 per hour depending on the tasks required, plus £15 for pre-meeting preparation or paperwork between meetings. Local travel will be reimbursed.

For more information:   Click here or contact the CAPC Patient and Public Involvement and Engagement coordinators, Victoria Wilson and Julie Clayton capc-ppi@bristol.ac.uk  


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Volunteers with learning disabilities quality checked GP practices in Swindon

Healthwatch Swindon have recently completed a report about nine quality checking visits made to GP practices and dental surgeries in Swindon. The visits were undertaken by supported volunteers with learning disabilities between August 2018 and April 2019.

According to NHS England, “Quality checking is where people with a learning disability, autism or both are employed to help us look at the quality of the services they use and tell us how we can make them better.

Healthwatch Swindon worked with Swindon Advocacy Movement to recruit and train volunteers and support them to undertake the visits.

Whilst all providers made some specific arrangements to meet the needs of people with learning disabilities or on the autistic spectrum there are common and consistent themes and recommendations for change or improvement in all the reports. Practices should bear in mind the requirement to make reasonable adjustments and the guidance available.

The volunteers made three main recommendations which were common to all the premises visited:

  • Improved physical access including parking arrangements and door opening.
  • Provision of easy read signage and information throughout – both inside and outside buildings.
  • Clarity of displayed information.

You can read the full report here.

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Health and Care – What’s YOUR opinion?


by Mike Bell, Public Involvement Facilitator, May 2019

I recently received an email inviting me to an event at Bristol City Hall entitled ‘Thinking big about online feedback’. It was one of those emails that had ‘cascaded’ through various channels and originated from an organisation I’d never heard of called Care Opinion.

Online platforms such as Twitter, Facebook and the recently launched hyvr all offer members of the public a chance to have their say about health and care in the UK. Within our public involvement team at People in Health West of England, we’ve debated the usefulness and effectiveness of these on many occasions. So, as City Hall is only a five minute walk from my desk and Care Opinion were offering refreshments I thought I’d go take a look.

Dazzling statistics

The first speaker was the CEO of Care Opinion, James Munro who you would expect to be enthusiastic, and he was. Dazzling us with statistics about numbers of users and success stories: over 343,000 stories told, over 9,600 staff listening, 100,000 visits every month with stories on Care Opinion viewed over 83 million times. Fifty or more trusts reporting a better than 95% response rate and, more importantly, the changes made to services as a result of people’s stories. The cynic in me was wondering about James’ maths by this point.

James was followed by the Director of Patient Centred Care (you might think of this as Complaints, PALS or Patient Experience) at Taunton and Somerset NHS Foundation Trust who was equally enthusiastic.  She said that, despite the fears of some staff about the potential for a barrage of complaints, most stories (about 67%) have been positive. Additionally, she added, the negative stories can be responded to quickly, by the most appropriate member of staff which means they rarely become “formal complaints” and everyone is happy.

Next was a lay board member of a London GP confederation made up of 43 surgeries who told a similar success story and by now, members of the audience representing patient experience teams in other trusts began joining in with more praise for Care Opinion.

This was the point where I surreptitiously took out my phone and Googled “Care Opinion” under the table. Once on the Care Opinion website I randomly searched “knee replacement surgery” and found hundreds of stories.  I was able to see at a glance which had been read and which hadn’t, as well as follow any responses by the various trusts.  I could also see where changes had indeed been made to services and where stories had been used as training tools. It seems some of the praise was justified, although there were stories about poor experiences which had neither been read nor responded to.

So, this is how it works

Go to the Care Opinion website (no need to log in) and tell your story about your health and care experience. Care Opinion then moderate it (to make sure it’s anonymous and doesn’t breach their guidelines). They then forward it to the relevant care staff so they can hear what you think. They may also pass the story to Healthwatch or NHS England if they think it’s something they need to hear about. If it’s positive, staff can share the story so their colleagues know they are doing things right. If it’s negative they can respond via the website which, in some cases, may lead to a change in the way things are done.

Someone once said “the greatest barrier to communication is the illusion that it has been achieved” and we see that all too often these days. Where once you would write a letter and hope for a reply within two or three weeks, we now expect immediate responses to texts, emails, WhatsApp messages and Tweets and crikey do we get angry when we don’t get it.

There are clearly examples of stories, good and bad, on Care Opinion that haven’t been responded to and I believe one or two trusts never respond (though you have to wonder why). However, there are plenty of examples on their website where real communication has certainly been achieved and where patients appear satisfied their voice has been listened to.

If you haven’t already heard of Care Opinion and you have a story, good or bad, about the health and care system, I suggest you give it a go.

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Invitation to be part of a patient group to improve the care of people with Bladder and Bowel problems

Closing date: Thursday 13 June

For: People with experience of bladder and bowel problems.

What: Many people have bladder or bowel problems but not many people talk about it. Bladder and bowel control problems affect a broad spectrum of individuals and the entire age range from young children to our frail elderly. More can be done to help these individuals with a focused effort on championing this area of healthcare.

North Bristol NHS Trust and the University of the West of England (UWE) are inviting patients, as well as leading experts from the Bristol city region and further afield to work together in new ways, including acute hospital trusts, local mental health trusts, universities, the city council and clinical commissioning groups to be part of a proposed Health Integration Team (HIT). This group of people will come together to focus on these issues and drive advances in care, research and education for the local area.

When: The initial patient and public group meeting for the proposed Bladder and Bowel HIT will be on on Friday 14 June from 10-11am at the Health Tech Hub.

The Health Tech Hub is located in the University’s Enterprise Zone which is accessed via the North Entrance of the University of the West of England, Frenchay Campus.

This will be an opportunity to find out more about the aims and purpose of the proposed HIT, express your own concerns to be addressed in this area and consider becoming actively involved as it develops and starts to undertake projects. The project team would be delighted to welcome you to the meeting and hear your views.

For more information: Please email sharon.nolan@nbt.nhs.uk if you are interested in attending the meeting. If you have any questions about the project, contact Dr. Nikki Cotterill nikki.cotterill@uwe.ac.uk, who is leading this important area of health development.

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Patient voices are leading to improvements of Somerset’s adult safeguarding service

New feedback gathered by Healthwatch Somerset on the county’s Adult Safeguarding service will be used to improve it for the future.

Healthwatch Somerset is the county’s independent health and social care champion. They listen to what people like about local health and care services, and what could be improved. Better communication through the safeguarding process and clearer information on staying safe in the future were just some of the recommendations made by families, carers and those who have been using the Somerset Adult Safeguarding service.

The Somerset Adults Safeguarding service, which protects an adult’s right to live free from abuse and neglect, dealt with 1,830 concerns in 2017/18 but only received feedback from six people.

Somerset County Council, who run the service, approached Healthwatch Somerset to help develop a new way of improving the service using the voice of the people who use it.

Emily Taylor, Manager of Healthwatch Somerset, said: “We worked closely with the Adult Safeguarding Team to design a questionnaire and considered an approach that would be effective but also deliverable by the team going forward.

“Our volunteers contacted people who had been through the safeguarding process. Several respondents said that they did not always know what was happening throughout the enquiry and that they were not being asked their opinion on what they wanted to happen.

“We recommend key questions are asked and recorded throughout the enquiry. This would help to check people’s understanding of what’s happening and their feelings about their level of involvement in the enquiry.”

Emily continued: “Half of respondents said that they either didn’t get any information or would have liked more information about staying safe in the future. We recommend that key agencies review the information made available to adults at risk and their advocates about how to stay safe.”

A spokesperson for Somerset Adult Safeguarding Service added: “As a service we thank Healthwatch Somerset for their support and enthusiasm in their undertaking of this pilot, the findings have far exceeded our original expectations.

“We will actively work towards enhancing service user engagement into the safeguarding process to ensure their voice is heard.”

You can read the full findings in their report Evaluation of Somerset Safeguarding Service: User Feedback Process.

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Public contributor wanted for Research Design Service management team

Closing date: Friday 31 May

What: The Research Design Service (South West) are looking for a member of the public who has a broad interest in health and social care research to join their senior management team. It would involve attending a monthly meeting in Taunton, reading papers beforehand and sharing your views on what you have read or heard being discussed.

For: They are looking for someone with experience of committee membership at a senior level. An existing link with and understanding of the work of the Research Design Service would be an
advantage but not essential as full training and support will be given.

Where and when: The team meets every month for around two – three hours and the meetings are usually held in Taunton. Interested applicants should apply by sending a brief description of your interest in the role along with a CV or summary of your personal and employment history to Helen Wavish h.v.wavish@exeter.ac.uk by Friday 31 May. Shortlisted candidates will be notified by 5 June and interviews will be held on 11 June in Exeter.

Payment: Public contributors supporting the Research Design Service are paid a fee for their time (£150 for a full day, pro rata for shorter meetings) and travel.

For more information: Read more about the role here or contact Helen Wavish, on 01392 72 6724 or h.v.wavish@exeter.ac.uk

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New digital health training well received

On 28 March 2019 People in Health West of England and Bristol Health Partners ran a new training session for patients and public contributors to learn about digital health and use of data.

The workshop gave an overview of how digital technology and data are being used in health and care and what this means for patients. Participants were introduced to the concepts by local speakers and had the opportunity to share their thoughts through interactive games and discussions.

The aim was for participants to be better informed to contribute to conversations on data and digital service design and development. Feedback from the day was really positive with all respondents rating the training as either ‘very good‘ or ‘good‘ in improving knowledge of digital health and uses of data. You can read more detailed feedback in the report below.

“Thanks for making it understandable for non-technical people”

“Invigorating, stimulating, exciting day; thank you”

As far as we know, it is the first training of its kind in the UK. The workshop was designed by John Kellas (Community Innovation and Engagement Consultant working with Bristol Health Partners) in collaboration with a design and facilitation team. The team are planning to run a second session in the Autumn and publish a resource pack to help others run similar sessions across the country.

Olly Watson, Senior Project Manager at Bristol Health Partners has produced a report from the first pilot session which you can read here.

If you are involved in work to increase the patient and public voice in digital health and data initiatives, do get in touch at hello@bristolhealthpartners.org.uk or enquiries@phwe.org.uk

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Do you have experience of a heart condition requiring hospitalisation?

Closing date: Wednesday 5 June

For: Adults with experience of a heart condition requiring hospitalisation.

What: Researchers from the University of Bristol are planning a study to investigate the use of electric bikes to aid recovery following hospital discharge. They would like to run a focus group for people who have experience of a heart condition which required hospitalisation to develop ideas for this research study. You will be asked to comment on their current study plan and to help them make sure it is practical and realistic.

Where and when: The meeting will take place on Thursday 6 June from 17:30-18:30 in the centre of Bristol. Snacks and refreshments will be provided, and you will be reimbursed £21.57 per hour for your time plus reasonable travel expenses.

For more information: If you would like to get involved or find out more, please contact Lauren Scott Lauren.Scott@bristol.ac.uk or  0117 342 1247.

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