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Event 7 January 2020: Developing a vision and plan for personalised dementia care

Date: Tuesday 7 January 2020
Time: 10am – 4.30pm
Venue: Leonardo Royal City Hotel, London

The next Dementia Choices Action Network (DCAN) full assembly will be held on Tuesday 7 January 2020.

DCAN is a newly formed joint initiative from the Alzheimer’s Society, NHS England and Improvement, and the Coalition for Collaborative Care. Its mission is to ensure that as many people as possible affected by dementia benefit from high quality, personalised care.

The focus of the assembly event on the 7th January will be on exploring what ‘good’ personalised dementia care looks like and what needs to happen to make this a reality.

An agenda for the day can be found here. It will be an interactive event with lots of opportunities for discussion and ideas. We will be looking at all six areas of personalised care of NHS England’s Comprehensive Model for Personalised Care, including: Shared Decision Making; Choice; Personalised Care and Support Planning; Social Prescribing; Supported Self-Management; and Personal Health Budgets and Integrated Budgets. We will also be framing discussions in the context of Universal Personalised Care and the NHS Well Pathway for Dementia.

The day will be an opportunity to co-produce a vision for DCAN and the outcomes will be used to inform a DCAN Dementia Plan for Universal Personalised Care.

During the course of the day, participants will also hear about the good practice and innovation work that is taking place at a national and local level and practical examples of how personalised care has worked for people with dementia.

To ensure we keep the event manageable and give people the best opportunity to contribute and to have their voice heard, we have a maximum number of 60 places available. We also want to have a representative mix of people from across sectors on the day, including people affected by dementia and those in frontline and managerial roles.


At this stage, we are asking people to register their interest and confirm which areas of personalised care they are interested in and/or have expertise/experience of.

Participants will be split into six groups for facilitated discussions on one area but there will be opportunities to contribute to the other areas during breaks.

To express your interest, please complete this form. We will be confirming places, allocated table discussions and an agenda no later than Monday 16 December.

We hope that you are able to join us for this event. Please also feel free to share this invite with your own networks.

For further information, please email

Building Communities that Care

A Rethink report has found that people severely affected by mental illness wanted most support in getting benefits, staying active and accessing free community initiatives such as gardening or peer support groups.  But many people surveyed reported that they are not being offered this support.

The report ‘Building communities that care:  A blueprint for supporting people severely affected by mental illness in their local communities by 2024’, Rethink argues that by supporting people as a ‘whole’, we can give them the opportunity to thrive.

When it comes to supporting people severely affected by mental illness. making sure people are able to access high quality treatment in a timely manner is one vital part of the picture.  But we also need to think about all the other factors that shape our mental health: housing; jobs; finances; and support networks.

Rethink thinks it’s time that communities and organisations come together to play their part in providing social activities, volunteering opportunities, or advice for issues such as debt or unemployment .

Read more and download the report on Rethink’s website.

ADASS Guide to efficient and effective intervention for implementing the Care Act

Produced by the ADASS Carers Policy Network, the guide is made up of four documents providing guidance for professionals working with carers in Local Authorities implementing the Care Act 2014. The documents bring together a summary of the key sections of the statutory guidance relating to carers with existing good practice and effective operating models from across the country as well as capturing the direction of travel of Local Authority practice since 2014. There are four documents that can be downloaded on the ADASS website:

  1. General responsibilities and universal
  2. First contact, identifying needs and assessment
  3. Person-centred care and support planning
  4. Integration and partnership working

Tempo and community champions develop future for Active Ageing network

Tempo recently gathered together community champions from across Wales to celebrate older people’s contributions to communities and set the agenda for the future of Tempo’s Active Ageing network. Time Credits are encouraging more older people in England and Wales to get involved in communities to improve health, wellbeing and quality of life for people aged 50+. People earn Time Credits for giving time to their community and spend them on accessing a wide range of fun and inspiring activities (see Read the blog from the event or contact for individual stories.

Dying Matters Week

13 May 2019 marks the  start of Dying Matters Week. The theme of the week is “Are We Ready?”

Preparedness is a very current topic in end of life care at the moment – especially concerned with early identification and communication with people who are nearing  end of life. If this is achieved, care can be better planned and personalised to the individual, for instance by creating a personalised care and support plan or providing a personal health budget can enable more choice and control over the care and treatment a person receives.

NHS England works with organisations through the Ambitions Partnership, to improve care in accordance with Ambitions Framework, which has been co-produced and identifies what good end of life care is. Throughout Dying Matters Week, NHS England will be discussing a different ‘ambition’ each day and discussing what a ‘good death’ and personalised palliative and end of life care may look like.

So, look out for the latest blogs, videos and case studies and why not join in the conversation?! @Pers_Care #DyingMatters #AreWeReady #PersonalisedCare

Your help needed – PHB survey

Thank you to all our partners who have promoted this year’s Personal Health Budget (PHB) user survey, closing shortly on 14 May 2019.

Unfortunately, we have considerably fewer respondents than at this stage in last year’s survey, and we really need your support to ensure we get as full a picture as possible of people’s experiences of personal health budgets, personal wheelchair budgets and integrated budgets.

It is open to all current or previous budget holders and those who support them, including those who responded last year, and, for the first time, will separate out wheelchair budgets from other types of personal health budgets..

As a result of the 2018 survey, NHS England has:

  • Started a new project to explore the challenges personal health budget holders face with recruiting and employing personal assistants.
  • Launched #myPHBstory as a Twitter hashtag to capture and share people’s stories
  • Executed a series of eight regional workshops across the country to commissioners to help them improve their personal health budgets for NHS Continuing Healthcare – co-produced and co-delivered with people with lived experience of personal health budgets
  • Developed long-term plans to offer better information, advice and support for those entitled to or interested in a personal health budget
  • Committed to training more people with lived experience to influence systems and support individuals

The findings will again be used to improve the support for budget holders and applicants in England.

Could all organisations working with people with PHBs please share the link widely, including with anyone you know personally who receives a personal health budget or personal wheelvchair budget, and please make sure local partners, agencies and support organisations are aware of this survey.

If you can promote this through social media, please use the hashtag #NHSPHB or tag @NHSPHB on Twitter so we can retweet it.

Will you join the What Matters to You’ conversation?

What Matters to You’ Day is fast approaching on 6 June 2019. It encourages more meaningful interactions between health and care professionals and people by having more person-centred conversations. The day will help to raise awareness and celebrate the positive impact that asking ‘What Matters to You’ can have on the lives of people. Posters, stickers and badges are available, and you can register and order these free resources at For enquiries please contact  and don’t forget to join the twitter conversation #WMTY2019.

Being part of C4CC

Mandy Rudczenko

Mandy Rudczenko blogs about her time with the Coalition for Collaborative Care’s co-production team.

The day I got involved in the Coalition for Collaborative Care was a day that changed my life.

I had dabbled in patient/public/carer involvement, but his felt like a whole new ball game. At the time I was having regular battles with my son’s consultant. My son has Cystic Fibrosis, which involves a heavy treatment burden to stay alive. A long term condition like this brings with it a long term relationship with a medical team, which can have a huge impact on a person’s life.

The battles we had centred around trying to de-medicalise my son’s treatments; e.g. I had been trained to do intravenous antibiotics at home, but the new consultant wasn’t happy about parents doing this. The conflicts often left me feeling like a bad mother.

The first workshop I attended about the proposed ideas for the Coalition for Collaborative Care (June 2014) gave me a fresh perspective on the relationship between patient and clinician. I had a long chat with a doctor who empowered me into realising that the medical team had a duty to work with us, and to practice shared decision making. I returned home full of hope and wrote a letter to my son’s team, saying that I wanted to work with them in a more collaborative way. It didn’t have much impact on them, but it was mine and my son’s first step on the journey to self-management.

Having been a member of the Coproduction Team for 4 years, I like to think I have made a difference. I have done things I never expected to find myself doing:

  • Co-chaired NHSE workshops
  • Given talks at the Kings Fund
  • Co-facilitated coproduction workshops for the Reading Well scheme
  • Had blogs published
  • Sat on the main stage at NHS Expo.

The opportunities I have had with the Coalition for Collaborative Care have helped me to evolve into a different person. I am now someone who champions the importance of the skills and experience of patients, carers and the public, in the coproduction of health and social care innovations. The skills I have developed have also led to me becoming involved in other opportunities, which have enabled me to see myself as much more than ‘just a carer’.

New times for co-production at C4CC

Fiona Carey

Fiona Carey blogs about her time with the Coalition for Collaborative Care’s co-production team.

New times at the Coalition for Collaborative Care. With NHSE’s publication of Universal Personalised Care, and the plan to make personalised, patient-centred care business as usual in the NHS life, coproduction within C4CC will be represented in the future by patients and carers already ‘embedded’ in the Partner Organisations.

This probably makes sense, but a general caution is required I think. There has been much celebration, and rightly, about the NHS’s widespread ‘adoption’ of personalised care, and about its insistence that this will be at the heart of ‘everything we do’. Heavens knows, we’ve spent long enough trying to make it so. But having a plan for a thing isn’t the same as having the thing in place. It won’t be done until it’s done. And with the massive problems caused by staff shortages, it’s hard to see a painless swift roll-out of such a huge, if important, initiative. It is fantastically important to bear in mind that adopting a widespread initiative doesn’t in itself actually deliver the changes it aims to engender. It won’t be in place until every patient has a good experience, has the best available care, has the best possible outcome, every time.

I’ve been thrilled to work with The Coalition for Collaborative Care since its inception, and proud to have been part of an organisation that has not only championed but modelled co-production. The organisation was established by a group of people absolutely committed to the idea that people with long term conditions – and who necessarily have lots of experience of services – have probably got a pretty good idea about what those services ought to look like, and that they should be working with and alongside healthcare professionals on an equal footing. ‘We know things you don’t know. We see things you don’t see.’ It seems pretty obvious, eh?

It’s earliest planners – managers, clinicians and health care professionals – were absolutely determined to put co-production at the heart of how the Coalition worked, and were talented at getting people from many difference organisations and walks of life to work together. And between us we made stuff that wasn’t just a messy compromise (always tempting, but never advisable), but that was hammered out, gleaning the best of everyone’s input, and melded it into something workable.

It hasn’t always been comfortable, but that’s one of the famous lines about co-production: if it feels comfortable, it probably isn’t co-production.

The patients and carers who came forward – often dubbed ‘experts by experience’ – were an astonishing bunch of people, with the most amazing range of skills, knowledge, expertise and – in most cases – years of experience working alongside professionals to improve services. They were vocal and sometimes they were arsey. I was daunted by their know-how, and I learnt lots from them. It was rarely ‘comfortable’, but it was positive, affirmative, we got a lot done, and we often had good fun on the way. Good grief, it’s been a privilege.

C4CC bids farewell to co-production team members

In March, we saw the final meeting of C4CC’s Coproduction Team, as the current team reached the end of their terms. Team members met and reflected on their experiences, and enjoyed a cake at their final gathering.

Coproduction Team farewell

C4CC Chairs Professor Nigel Mathers and Anna Severwright thanked people for their energy, commitment and effort over the years, on behalf of the partners.

Coproduction has been one of C4CC’s core commitments since its inception, and the co-production team members have worked on a significant variety of projects during their tenures. Team members Mandy and Fiona blogged about their experiences.

Over the coming months the C4CC support team will be working closely with C4CC’s 60+ partners, to ensure that co-production remains central.  We are delighted that the partnership now includes a growing number of user led organisations that can help enrich the ongong co-production commitment.  We want to make sure that a wider range of people’s lived experiences support the implementation and embedding of the universal personalised care model.  This includes working more closely with NHS England’s Strategic Coproduction Group, the Peer Leadership Academy and its graduates, as well as the coproduction leaders and champions in C4CC ‘s partner organisations.