Hello, my name is Clare Enston – I work on all things patient feedback and the insight we can get from understanding other people’s perspectives. How are you? These are difficult and strange times we live in – I hope you and yours are keeping well.

Fresh on the heels of the fabulous 10^th PENNA awards, we’re now in our fourth year of working with Ruth, Louise and Helen to take the work of winners, runners up and shortlisted projects around the country on our Insight Roadshows, with the express aim of celebrating the work and building connections between colleagues on the possibilities of improving services for patients.

The projects we heard from last week demonstrated the richness that can come from personal connection in various ways – from the work of Malcolm Heaven in Leicestershire to use bread making as a means to connect and support, to the global connections made by University Hospitals of Plymouth NHS Trust in their #RehabLegend project – this year’s overall winner. The energy that comes through during the sessions as well as the commitment of colleagues spurs us on long after the teams call, knowing that there are brilliant people out there, doing all kinds of thoughtful work to changes lives for the better.

Whilst the work of these projects was done some time ago now, it feels right to celebrate the excellent work of teams now, to remind ourselves of the power of what can be done and how important the patient experience remains. I’d like to say a big thank you to Helen, Louise and Ruth for creating such an inclusive and easy-to-navigate virtual space for us to hold these events this year. If you have chance to join the remaining sessions, please do join us on Thursday 29 October and Thursday 5 November.
In shifting our collective gaze back towards keeping patient experience on the table as we continue to work within a pandemic, one of the main things we’re doing nationally is getting the Friends and Family test (FFT) up and running again for services outside of primary care. Prior to the pandemic, we had updated the policy in response to feedback from healthcare staff along with patients so that it works better for those who use it or encounter it. As we reinstate it, we will move to this new policy which means a new standard question, suggested new free text questions, and flexibility on timing which puts all the power in local teams’ hands.

At its simplest, FFT is really just about listening bravely to patients, putting ourselves in their shoes and having an ambition to improve things, and in recent weeks we’ve heard some great examples of where teams have not let the pandemic deviate them from that. Leeds Teaching Hospitals, University Hospitals Dorset NHS Foundation Trust, Buckinghamshire Healthcare NHS Trust and University Hospitals Plymouth NHS Trust all carried on using FFT to listen to patients and we’ll be sharing their stories of what why and how they did this on our case studies page shortly. If you are catching up with all things FFT and would like some additional support, please get in touch with our helpdesk: england.friendsandfamilytest@nhs.net

The work of patient experience teams does not focus solely on patients; the broader family and support team often navigating the NHS for their loved ones is also critical right now; Carers UK estimate that the pandemic has created an additional 4.5 million new carers so it feels timely to mention that FFT can be used to hear from carers, relatives, partners and visitors as well as patients.

More broadly still, volunteers have played a significant role both during the Covid-19 pandemic and will continue to be needed to support the NHS throughout winter and a second wave. Whilst many of our volunteers have been stood down during the pandemic, many have continued to support, adapting their roles to support patients within covid restrictions, such as relaying messages to loved ones, supporting patients to access virtual services and supporting hospital discharge. Volunteers have also played a significant role in supporting our NHS staff during the pandemic for example volunteers ran donation and wellbeing hubs, distributed food and wellbeing kits to staff, enabled staff to take vital breaks, supported with PPE and provided mental health support.

We have produced Covid contextualised role descriptions to ensure roles are appropriate and can be delivered safely amidst Covid restrictions, such as:
Administrative Volunteer
Staff Wellbeing Volunteer
Patient Liaison Support Volunteer
Patient Buddy
Response Volunteer
Meet and Greet Volunteer
End of Life Volunteer
Discharge Support Volunteer

We are keen to invest in volunteering services and have opened applications for our Covid/winter volunteering programme. NHS trusts can apply for up to £20K for volunteering activity which will contribute to reducing pressure, support staff wellbeing and improve patient experience. We’re looking to fund trust volunteering activity between November 2020 and March 2021. The deadline for applications is Wednesday 4 November. For an application pack, or for any questions about the role descriptions, please email: england.volunteering@nhs.net

Of course I can’t not mention staff, whose dedication and stamina at this time cannot go without recognition and gratitude. Thank you for everything you continue to do. If you work in an NHS Trust, you may have received your copy of the National Staff Survey for 2020. This year it feels more important than ever to hear from staff so that we can understand your collective experience and take this forward into plans for the future, so please do fill it in, if you are able. It’s open till later in November.

If you’d like any further information about any of the topics mentioned, or just want to connect, please do! I do my job better when I understand how you do yours, so please do get in touch on clare.enston@nhs.net

This month's blog is from Richard Littledale featuring last year’s Fiona Littledale award winner The Haematology Nursing Team at the Royal Chesterfield Hospital, led by Tracey Small. 

On September 18^th, it was my very great pleasure to attend the final online session of the PENNA awards, together with my son. The Fiona Littledale Award, currently in its second year, is given to those involved in oncology care who demonstrate outstanding commitment to continuing education and innovation in their particular field. The Haematology Nursing Team at the Royal Chesterfield Hospital, led by Tracey Small, are worthy and enthusiastic winners for 2019.

When I spoke to Tracey, I was met with a blend of common sense, compassion and innovation which has driven the team to this point. The key skill though, which surfaced again and again in our conversation, was a flexibility to meet new needs.

Tracey explained that the Haematology Support Group started small, with a few patients at a critical stage who wanted to get a better understanding of their condition. Whilst this was meeting a need – it soon revealed another one. People with blood cancers can get very sick very quickly – and so the team felt that it would be better to provide support further back down the line. Out of this a programme of education was born, to which patients and carers were warmly invited. Experts of every kind came to share their insight, on everything from transfusions and chemotherapy to the psychological impact of the cancer. Whilst this programme was well received by those who attended, it could not meet the needs of some.

Tracey and the team realised that for some people a support group, meeting in a physical space together, simply was not appropriate. Some were too shy or too vulnerable to attend. For others, the logistics of getting to such a meeting, alongside their other appointments, were simply too great. It was time for another flexible adaptation, and the Buddy Scheme was born. Tracey and the team are now able to match new patients with others who have been through the treatment ahead of them if they would find it helpful. Their allocated Buddy can stay in regular contact with them, providing reassurance, help and guidance. All new patients get a leaflet about the Buddy Scheme in their diagnosis pack, and many are taking up the offer.

Within the restrictions of the current pandemic, the Buddy Scheme is perfect. The support which it provides can be provided remotely by phone, email, or even card and letter. A scheme born in the hospital is now finding its way out into homes and lives in a way entirely unaffected by physical restrictions. It is an idea which has found its perfect time. That said, the team are already looking to see if there are other, new ways in which they can offer support…

Just one week after the award was made, the team were proudly sporting their Fiona Fund badges on their lanyards. One week after that, a new laptop arrived for their training programme, funded by the Award. This means that the team can continue their professional development online even when they cannot travel into the hospital. ‘It has been a game-changer for us’, said Tracey.

I suspect that the Haematology Nursing Team have been game-changers for many, many people and I could not be more delighted to have the Fiona Littledale Award associated with them.

Richard Littledale, November 2020 

 Once again, we are delighted to share the thoughts of Henry, a 17 year old student who wishes to study Medicine. 

 This month we were invited to listen to a consultant paediatrician on what their ‘day-in/day-out’ practice was. This I found intriguing as I have spent my fair share of time in hospital with various illness and injuries and have met many a paediatrician, the good and the bad. We listened to what he had to say with regards to every patient being a new personality as working with children and young people could be a very fluid and changing job. He talked to us further on the highs and the lows of treating and helping children and young people. He told us of some of the various cases he’d had and having been asked a question about attachment to specific patients he told us that it was easy to become close with both a long term patient and their family, and that it can be quite hard if something bad happens to them. In that case he has to put a professional face on and ‘deal with it’ as it were, but that it’s also very exciting to see the growth and development of children into young adults where they may leave his care.

After this talk, we briefly discussed the development of our charter for the Children’s Centre, which was coming along nicely. We are looking forward to being shown a few samples of them at our next meeting to discuss which are our preferred options. Sadly, the meeting was cut slightly short as one of the staff who was due to update us more in depth on the development was unable to join the meeting. It demonstrated how difficult things are in the NHS at present and how we all need to be flexible and accommodating – I’m sure that’s a trait I will need to fully develop as I progress with my studies. 

 Once again, we are delighted to share the thoughts of Henry, a 17 year old student who wishes to study Medicine. 

We started off our July meeting very short on numbers due to the summer holidays beginning, but gradually people arrived and we had a good quorum. We then began proceedings with an update on the Gloucestershire COVID-19 situation, where we were told that there were currently 20 hospitalised cases with only 3 being in critical care, all patients who had only had one vaccine dose or none. We agreed this was positive and as a group we would endeavour to promote vaccination as much as possible, especially to the younger generation.

After the quick update on the COVID-19 situation throughout the county we moved to the meetings main event, which was a talk on the county’s plan in regards to sustainability and future plans to counteract climate change. We talked on the links between climate change and the recent heatwaves causing heatstroke and a rise in hospital admittances. In addition to this the effects of flooding on mental health was mentioned with particular reference to Tewksbury in 2007. We then looked at the Trust’s map of contribution to greenhouse gas emissions and how these were being manged through decarbonisation as well as the benefits of virtual outpatient meetings online which have limited journeys into the hospitals, and as a geography student I was very interested in these. We were then made aware of the Trust’s goal of being carbon neutral by 2040, a goal which at the current time seems very far away – but plans are in place and it’s a great goal to have. Lastly, we moved talk to the current matron of the children’s centre in Gloucester hospital who was there to listen to our feedback on the progress of the rebranding of the children’s centre as well as the potential renaming.

As for myself, having finished A-Levels, bringing an end to my school career in a rather strange way, I am waiting nervously for my results. I am also in the process of studying for my UCAT exam which I will take in late September, as well as preparing as much work experience as I can and planning what I can be doing the year ahead to boost my application to medical school in mid-October.

 This month we are delighted to hear from our PENNA Keynote Speaker and Patient Representative, Michael Young, telling us all about the work he has been doing since we saw him back in September 2022. 

After ten years of judging the PEN awards, I was invited to give a keynote speech at PENNA 2022. Having worked in Patient Experience and Safety for 12 years I thought I should do something different. Telling my story to a large audience was certainly different.

After my speech, I spoke to a number of organisations who were looking for help with various projects. One of these organisations was a patient group from the North East and North Cumbria who were presenting a new patient led service improvement initiative led by patients for patients.

They proposed to be the voice of cancer patients in the North East and North Cumbria with a view of sharing best practices and improving services. They were active in the communities they serve and collected patient and carer experience survey data and patient stories on paper collating and sorting the feedback by hand and passing the information to Trusts the NCA and other interested bodies. They were supported well by their Cancer Alliance and the Trusts.

Their work was carried out by volunteers and quite labour intensive. Tori, the organisation’s Chairperson, was keen to move the group forward with a view to becoming a Charity at some point in the future.

My daughter Anna is a data analyst for the NHS and on my return from the event we discussed the possibility of creating a digital survey tool alongside NCV. Anna designed an outline idea which we discussed with Tori.

By the summer of 2023, we had a sample survey which we demonstrated to selected Trusts. The tool maps the patient survey back to Don Bewick’s 6 dimensions of care and for the first time provides Trusts with a meaningful metric that is that is truly patient led. The tool works on standard iPads and is conducted by trained volunteers who are all former patients or family of cancer patients. Once complete the survey is submitted and uploaded to the cloud via Microsoft secure UK based servers, where virtual machines handle the data and carry out the processing so that we hold no identifiable information on local devices. Finally, this data is transformed within Power BI to produce dashboards and reports for individual Trusts, as well as data packs for the ICB and NCA.

We are pleased to say that in November 2023 Northern Cancer Voices became a registered Charity in England and Wales. This brings a number of different challenges, including finance.

Our live trial will be starting in February 2024 and we are really excited about the insight that we can give. We are also presenting the tool to the National Cancer Team to get their view as we feel that this is the first time a patient ‘experience of care’ metric will have been designed and in use.

To find more about Northern Cancer Voices and the work they are doing, please head to https://northerncancervoices.co.uk/

In late 1999, 33 year old Patrick Barnes died of complications of the auto-immune disease ITP. Throughout his 8 week hospitalization, his dad and step-mother Bonnie and Mark and his wife Tena were very impressed by the clinical excellence they witnessed from Patrick’s nurses. Moreover, their hearts were deeply touched by the compassion with which Patrick’s nurses cared for him and for them. When he died, their experience drove them to find a way to express their gratitude to nurses for what they do every day in caring for patients and families. They created The DAISY Foundation™, an acronym for Diseases Attacking the Immune System, and The DAISY Award® for Extraordinary Nurses to provide an ongoing and deeply meaningful way for patients, families and colleagues to share their stories of extraordinary compassionate care and to say thank you to nurses and midwives.

When they started DAISY, Bonnie and Mark hoped they would get to say thank you to nurses in 5 or 10 hospitals in the U.S. They never imagined that twenty-five years later, more than 7,100 healthcare facilities and nursing schools around the world would be honoring nurses and midwives with The DAISY Award. Their belief that other patients and families would also want to thank their nurses and midwives has been confirmed. More than 3.2 million times, someone has taken the time to nominate a nurse for The DAISY Award.

DAISY nominations are powerful descriptions of the patient experience every healthcare professional likely aspires to provide. Patients and family members write their heartfelt gratitude to nurses and midwives who truly make a difference in their care and in their lives. Gratitude for what nurses and midwives do pours off the page and into the hearts of the people who receive it. This gratitude helps fuel nurses and midwives, reminding them of their purpose, re-charging them emotionally, keeping burnout at bay, and elevating their compassion satisfaction.

Today, The DAISY Foundation partners with 85 healthcare facilities in the UK. The Foundation helps each organization create the structure and resources an organization needs to run a successful, sustainable DAISY program. Founded on the need for ongoing recognition and continual celebration of nurses’ and midwives’ care, DAISY recognition contributes to a culture of gratitude in every organization that adopts it.

Meaningful recognition is a standard of a healthy, positive practice environment. The DAISY Award is an evidence-based and thoughtful way to provide it and a strong support for a positive patient experience. The Foundation looks forward to embedding this means of shining the light on all the right throughout UK healthcare facilities.

For more information, visit www.DAISYfoundation.org