Cervical cancer prevention in BME communities: raising awareness and overcoming barriers

jo's cervical cancer trustEvent: Cervical cancer prevention in BME communities: raising awareness and overcoming barriers
Location: The Studio Birmingham
Date: Wednesday 16th July 2014

1 in 3 women diagnosed with cervical cancer will die from the disease – but shockingly, in a recent YouGov survey, only 53% of black or minority ethnic women think that cervical screening is a necessary health test.

You can help to change this mindset in your community. Jo’s Cervical Cancer Trust and the NHS Cancer Screening Programme will be running a FREE workshop on Wednesday 16th July 2014 (during Ethnic Minority Cancer Awareness Month) at The Studio Birmingham. The day will provide information on how to develop a successful awareness programme for cervical screening in your community. You will hear from a range of experts, including other community leaders, who have already set up successful programmes – saving the lives of countless women in their immediate circle and beyond.

The key takeaways you will receive in this one-day seminar include:

  • How to encourage women to go for screening
  • How to provide key information to increase understanding
  • How to approach the barriers created by ethnicity
  • Meet other community leaders who have done it before

To register for the event, for more information or to apply for one of five travel bursaries to attend, visit: www.jostrust.org.uk/communities-beating-cervical-cancer

Follow us on Twitter: @JoTrust
Follow the event on Twitter: #CommunitiesBeatingCC

Patient Experience Professional of the Year

Patient Experience Professional of the Year

Patient Experience Professional of the Year

This year PEN introduced a new judging category – Patient Experience Professional of the Year. The entrants are nominated by colleagues or patients and are judged on the submissions and testimonials made on their behalf by those around them, from within and without the organisation. The inaugural winner was Sally Ryan of Ipswich Hospital Trust – here are some excerpts from the entry submission explaining why Sally was deserving of such an Award.

Name: Sally RyanPosition: Learning Disabilities Liaison Nurse

Sally started her lifelong quest for improving the experience of people with learning disabilities over 20 years ago. She started with volunteer roles which inspired and galvanised her to become a champion in her field. She describes as ‘the best job ever’ her role as a teaching assistant taking clients through their paces within a specially designed life skills flat. Early on she began honing her particular skill of tuning in to an individual’s specific way of communicating and learning and over the years she has developed her empathic abilities to an exceptionally high degree showing time and again an uncanny ability to get under people’s skin to enable them to communicate more clearly their needs and wishes. She also began to formulate her understanding of the wider social impact of this empathic approach – her clients were able to develop practical skills enhanced by the extra effort made by Sally to help them to develop their social and emotional skills. Sally describes this early part of her career as transformative – realising that people with learning disabilities do not see life as the challenge others perceive and by aligning herself with this view she has been able to create relationships of greater depth than ‘worker:client’ thus enhancing the quality of the care provided.

An epiphany of equal importance in formulating Sally’s approach was carved out of an altogether less pleasant work experience at a day centre where she witnessed and was encouraged to adopt an approach with little or no personalisation of care, no freedom for the clients, a high level of boredom (clients and staff) and an attitude of ‘maintaining’ or ‘containing’ people. A great of example of everything sally found to be an anathema.

Sally ploughed this experience into earning a first in her Specialist Practice Degree in LD ten years ago and established herself within the community services before deciding to make the leap to be a champion of LD patients’ experience within Ipswich Hospital – a busy acute district general hospital.

Sally came to the Trust in 2011 with a solid reputation for her work within the community and immediately her passion and dedication and approach stood out as exemplary. Sally had clarity of vision for improving the experience of patients with a learning disability. She understood that we faced challenges – she knew of these from her contacts within the community of some patients whose experience had not been good enough and she came with clear ambitions for us as an organisation.

Coming into a busy, acute environment and being the lone dedicated voice for a marginalised and perceived as ‘difficult’ group required Sally to stand out and stand up – potentially daunting for anyone!

Sally’s skills and experience in communicating and giving voice to a challenging and difficult topic enabled her quickly to build a network of supportive colleagues and gain the support of key Board and other senior staff – all necessary for taking forward such a big agenda.

Sally has a ‘big’ personality to go with the ‘big’ agenda and this has stood her in good stead to keep focussed and galvanise a whole organisation and its culture.
Sally arrived at Ipswich Hospital at a time when they had recently completed a short piece of work with a patient with a Learning Disability (LD) and her family carer following their raising of a complaint about the patient’s care and the lack of engagement with the family. This had resulted in the organisation focussing on some key issues eg; lack of basic care, fear/lack of understanding of LD, poor liaison with the family carer. The Trust had been privileged that the patient and carer concerned had wanted to make a difference and had talked to the Board of Directors, taken part in educating staff and the development of a DVD to share their experience and our response.

Sally joined us and took this catalyst to learning and ran with it. She identified key areas to target for improvement and has led the way across the organisation:

  • Access to services
  • Correct diagnosis
  • Support with treatment
  • People feeling safe and heard
  • Ensuring individualised care – getting needs recognised, understood and met

Taking a systematic and pragmatic approach Sally developed a strategy for working towards a greater standard of care for patients with a learning disability. Sally identified that we had to deal with both the simple and the complex and she has tackled each with the same optimism and enthusiasm.

A key to improving LD patient experience has been training staff – something which is a challenge for all organisations struggling to keep the frontline covered and costs down. Sally has provided formal training for over 1,000 staff since joining us but Sally’s approach is to educate, challenge and promote great care at every opportunity.

Typically for Sally she has been creative in her approach to training – building an army of 40 ‘link professionals’ enables on the job, informal training opportunities provided by people with a passion for LD issues on their own wards reducing the need for staff to leave the ward to attend training sessions. Sally also walks the wards – chatting and explaining as she goes – this personal approach enables staff to learn in a straightforward, practical way enabling staff to ‘just do it’. This approach has enabled staff to ‘join the dots’ and realise the fat handled cutlery can be really useful for patients with a LD as well as enabling staff to recognise the clues from patients when they need the toilet or are in pain.

Sally’s army of link professionals are often people touched by LD through their own lives as family members or carers/friends. Encouraging champions with this personal understanding can require some challenge and support but reaps rewards through their dedication and inherent understanding and empathy. Sally has developed their skills to enable them to support others in understanding mental capacity and facilitating consent; best ways to support people and make reasonable adjustments; enabling communication and understanding of people as individuals; ensuring family carers are involved.

Sally’s approach is to enable and encourage patients with a LD to have a say over what happens – however small or limited that ability might be – and encouraging/enabling staff to likewise.

This belief in personal empowerment and opportunity extends to Sally having created a learning disabilities (LD) expert patient support network who have undertaken the Expert Patient Support Programme training. This group is now fully involved in the development and progress of hospital services and proposed changes which also positively impact on services for all patients and carers. The group provide feedback on their own and others’ experiences of accessing the hospital and have advocated for patients and carers at training and development events. In particular they advised on the redesign of Central Outpatients providing insight into the signage and way-finding project whereby a mixture of coloured corridors, improved maps and signage using symbols as well as words was introduced.

In August they undertook an access audit of this completed work in Central Outpatients and gave a thumbs up to most of the signage whilst identifying further work needed on the maps and also the disabled access toilets. Without Sally’s support and championing this group would not have the gravitas it does nor would the voice of those with an LD be heard so loudly.

Sally has also led the way in creating a more seamless service – she facilitated Ipswich being the first hospital regionally to establish information sharing protocols with GPs and the Local Authority to ensure the early identification of people with LD via an alert across all patient administration systems. This has recently been recognised nationally as best practice and ensures potential barriers to accessing services are removed.

People with an LD are thus identified early, pre appointment assessments can be made, adjustments identified and patients/their carers are enabled to be actively involved in their care and treatment, with the hospital making the necessary reasonable adjustments to support individualised care.

This specific care is supported by the introduction of the LD patient passport and use of a purple dot symbol to be a visual reminder for staff on the Patient Needs at a Glance board above the bed.

Sally has supported 328 elective attendees on various pathways ensuring the highest quality of person centred care is provided.

Sally has ensured we have introduced access to easy read literature and is always finding creative tools for engaging and communicating with LD patients.

Ensuring the LD voice is heard is central to Sally’s tenet and as well as the expert patient group she has developed an ‘easy read’ feedback form although much of the feedback comes back via personal anecdote collected in conversation with patients and their carers. The grapevine is a very strong conduit for information and feedback within the local LD community. Before Sally started working with us the grapevine talked about how frightening hospital was and the few poor experiences coloured all. To ensure we learn from mistakes Sally instigated an alert system whereby all incidents, complaints and compliments involving a person with LD are reviewed by Sally who ensures that if there is a risk or area of concern, the necessary changes are made.

The grapevine now talks about the changes made and the ‘good stuff’ instigated by Sally and there has been a gradual shift in the ‘collective memory’ of the LD community. There can be no better illustration of the esteem Sally is held in and the impact of her work than the very recent LD community event held in September – Sally attended to talk about the changes at the hospital and she was treated to a standing ovation as she walked into the hall.

Kath Evans

There are approximately 12.3millon Children and Young People in England, that’s 22% of the population and their experiences of care matter.

We cannot address experiences of care unless we take a moment to ask, how is for you? What’s working, what could be better? The challenging element of working with Children and Young People is tailoring our communication to their developmental stage so we get the best outcome for all.  As a Children’s Nurse I’ve worked in the NHS for nearly 26 years and fully appreciate the busyness of day to day clinical practice and the demands made on staff, for health care professionals juggling is a critical component of our job description! Yet it’s the combination of science, art and humanism that create moments that matter to the Children, Young People and Families/Carers we have the privilege of serving, whether that be on a one to one, in a group situation, or on issues such as configuration of services.

Kath Evans

Children, Young People and Families/Carers constantly inspire me, children like Rhys who had a renal transplant at 18months of age and showed us what he didn’t like by breath holding – a pretty scary communication strategy which was very effective! Daniel, 14 who when I visited his school having spent a week in hospital asked me to take a note back to the NHS reminding us how scared patients are (attached). Thines who has Brittle Bones shared ‘in my 19 year of using NHS Services no one has ever once asked how is it for you?’ and parents including Jane Raca who writes eloquently of her experiences of ‘Standing up for James’ her son with complex disabilities and having to constantly challenge the system about her son’s and family’s experiences of care.

Kath EvansI am a bit of fan of Social Media, it’s a great way to make connections with users of services, including the wonderful Adam who tweets as @Adsthepoet he shares his experiences of care by blinking and blogging, and parents such as Rick, tweeting as @38lineblog dad to Isaac challenges how we are delivering on the 6Cs, Compassion, Care, Competence, Commitment, Communication and Courage. Social Media also offers professional connections with wonderful colleagues such as Cath Battrick in Southampton tweeting as @wooffa and Jerusha MurdochKelly tweeting as @jerushaMK and Walter Tan who tweets from @RMCHosp and Emily Roberts tweeting as @emily_melville – they all share how they are working to improve experiences of care across the country in real time, creating conversations that challenges current practices.

Of course I also have a remit for Maternity experiences of care, and inspirational now retired Consultant Midwife Sheena Byrom @SafefemmeSB is a twitter mentor! If we create great maternity experiences that the best foundation for that child and family that we could wish for. Sadly things don’t always go well and recent mapping of care offered to women experiencing miscarriage http://www.nhsiq.nhs.uk/resource-search/publications/pregnancy-loss.aspx highlighted there’s lots of good practice across the country we could be sharing to improve experiences in often incredibly sad situations.

My current role at NHS England as Head of Patient Experience, brings together my previous clinical, academic, managerial and service improvement roles, it’s a privilege to be part of a social movement that is amplifying experiences of care, including the 22% of population, our Children and Young People  who have a right to the best health care possible (UNCRC 1989)


I am delighted to be recognised by the Patient Experience Network, it’s a team I have the utmost respect for, however we are all outstanding contributors patient experience and all make a contribution by the attitudes we choose each day.  

Kindest regards


Kath Evans
Head of Patient Experience – Maternity, Newborn, Children and Young People
Nursing Directorate
NHS England
Mobile: 0782 4545954
Email: kath.evans3@nhs.net  Twitter: @kathevans2
‘High quality care for all, now and for future generations’

Dorset County Hospital

Title of Project
The Side Rooms Project – Dorset County Hospital uses crowd sourcing to engage frontline staff in improving the patient experience of hospital side rooms.

Dorset County Hospital

Dorset County Hospital (DCH) is a modern, 333-bed hospital, with 7 main theatres and 2 day theatres and 50 side rooms. It provides the full range of general, acute hospital services including an emergency department and links with satellite units in five community hospitals and has 3,114 members of staff. The hospital serves a population of approximately 215,000 people.
Dorset is a medium-sized county with a smaller than average, sparsely distributed and mainly rural population. Over a quarter of the population is of retirement age (in the whole of England, this figure is less than a fifth). The population of Dorset has been growing faster than the national average, particularly in the older age groups in which long-term illness is more common.

2.Aims of the Initiative
This project used the experience based design approach (NHS Institute for Innovation & Improvement, 2009) to understand the experience of healthcare in side rooms from the patients’, carers’ and staff perspective in a deeper way. Working in partnership with the Local Involvement Network (LINks) in Dorset, DCH discovered that patients in side rooms often felt isolated, at times disorientated and didn’t always understand why they were in the rooms. DCH wanted to address these issues and make significant improvements by engaging the frontline staff who service the side-rooms in making improvements to the patient experience.

3.What was done?
DCH used a ground-breaking way of collecting and using ideas from their staff to improve how patients experience their services and is now implementing the ideas put forward.

Using innovative ‘crowdsourcing’ methods, the project empowered staff of all levels to act as patient ambassadors. Using a private social-media style website called ‘Patient & Family Echo’ they anonymously submitted ideas for improvement, and voted the best to the top.

The campaign asked cleaners, porters, doctors and nurses to submit their ideas on how to improve the patient experience in the side rooms. All ideas were treated equally, which can be a problem for more traditional engagement technique such as focus groups.

The campaign was promoted to 175 doctors, nurses and support staff who work with patients in side-rooms, who were asked:
What can we do to improve communication with our patients about their stay in the side-rooms?
What can we do to make our patients feel less lonely and isolated during their stay in the side-rooms?

The campaign ran for three weeks and during this time:
17 representatives from all clinical groups came together to suggest improvements based on their interactions with patients,
They collectively made over 150 contributions, around 19 specific, actionable ideas.
This campaign was delivered without any meetings or workshops, allowing the whole consultation process to be completed in a little over a month.

Having implemented the improvements, DCH has engaged a volunteer to monitor them and the patient experience. The campaign enabled the Patient and Public Experience Team together with the Infection Control Team and Dorset LINks to work with their colleagues across the hospital to make improvements.

4.What impact has the initiative made?
The ebd approach enables healthcare providers to ensure that what might have been seen as ‘little things’ in the past are an important part of the delivery of high quality care, and involves understanding the experience from the staff, patient and carers perspective.

During the project, all contributions were mapped against the QIPP objectives of Quality, Productivity and Prevention, showing how these objectives are being met. Specific improvements include:

Clocks with day, date and time are being put in every room.
The League of Friends deliver a free newspaper for every side room patient.
Estates and Facilities plan more imaginative colour schemes when they next redecorate.
In partnership with Hospedia, a communication was sent to staff on how to request free television for patients, based on clinical need.
The Infection Control Team reassessed and restructured the communications given to patients and carers to help them understand the reasons for their stay in the side rooms.
Piloted Intentional Ward Rounding
Engaged a volunteer to monitor the changes and impact upon patient experience.

The campaign also saw the submission of a number of smaller ideas which constitute best practice in daily activities (e.g. ways of speaking with patients). These ideas were not made into formal action plans, as we used the website to encourage participants to put them into action themselves.

5.What next and where can we find more information?
We are systematically using this process to engage staff in service improvement and decision making. Our second campaign engaged staff to share ideas for patient experience improvement around themes from the National Inpatient Survey. The Patient & Family Echo team worked closely with us during the first project to help us build a capability we can use on our own. As we continue we will seek to identify groups of staff that have not engaged, understand the reasons why and try to encourage them to do so.
This campaign was widely publicized through CEO and Trust briefings, Sisters and Matrons meetings and the local press. The project was written up in full and available on the Trust intranet site. Reports were made to the Learning from Patients Committee, Trust Board, PEAT Committee and Infection Control Team meetings. Individual frontline staff were invited to participate in the campaign via their Trust email addresses. The campaign was publicized through the Dorset Echo, HSJ, Patient Feedback Challenge Website and Patient & Family Echo/Clever Together Website.




6.How might the initiative be relevant to other groups
Service improvement:
improve the experience of patients and their families in healthcare
drive efficiencies and increase quality
create more integrated and motivated workforce
more joined-up working with partners and suppliers

Robust, transparent strategies with buy-in from the off-set:
capture the collective wisdom of staff and stakeholders to inform strategic choices
use staff and stakeholders as a test bed for tactical ideas to drive action, fast

Patient & Family Echo was part of The Patient Feedback Challenge, and supported several NHS Trusts in running campaigns. The NHS Patient Feedback Challenge, created and managed by the NHS Institute and funded by the Department of Health, was a one year programme designed to find and spread great approaches which use feedback from patients to improve services.



7.What do you feel makes this initiative special?
Service Quality: Turns patient feedback into service improvement, quickly and transparently.
Staff Motivation: Helps staff feel engaged and valued, by giving them a voice in service improvement.
Compliance: Embeds a systematic approach that empowers staff to share insight & concern with leadership, anonymously.

8.Learning points
Go for it! Until you try something out you don’t know how it’s going to work in your organisation. Some of our campaigns have been more successful than others. It is important to communicate and publicize the project, throughout the campaign, so when you start one be prepared to set aside time for this aspect.

9.Materials for Sharing
Tools and resources about the ebd approach are available at www.institute.nhs.uk


Tools and resources for the Patient & Family Echo are available at www.clevertogether.com


Peninsula Community Health (PCH)

Peninsula Community Health (PCH)

Peninsula Community Health (PCH) is a Community Interest Company (CIC) providing NHS community health services to people in Cornwall and the Isles of Scilly. PCH employs just over two thousand staff, serving a local population of 532,000 and an additional five million visitors per year. PCH services include 14 community hospitals providing inpatient care and rehabilitation to patients discharged from acute hospitals or admitted by GPs.

As a participant in the NHS Institute Patient Feedback Challenge, Peninsula sought to:

  1. spread the ‘Kinda Magic’ principles of the PCH process of collecting real time, face to face patient feedback, to other NHS organisations. The process not only provides metrics data for monitoring purposes, but also gets to the heart of the reasons behind the results, giving staff something immediate to work with. There are 5 basic principles:
    • Face to face conversations (guided interviews)
    • Responses to questions recorded, probed, comments captured
    • Using non-clinical managers or other non-clinical staff ‘with influence’ (e.g. trainers) to visit wards and talk to patients
    • Real time verbal feedback to clinical staff
    • Production of quantitative RAG-rated data supported by qualitative information to ‘make it real’.

    This truly ‘ward to board’ reporting engages and empowers staff, resulting in improvement actions being taken whilst the patient is still in our care rather than later actions responding to retrospective (and poorly understood) metrics data. In other words, the Kinda Magic process is about ‘putting quality into metrics’

  2. spread the Kinda Magic process to patients ‘excluded’ because they have cognitive and/or communicative impairment e.g. dementia, aphasia, learning disability. Although we included relatives and carers when possible, the tool, process, and the skills of those who collect the data, neither equipped nor enabled us to be fully inclusive. We knew that we were not fully meeting our obligations under the NHS Constitution, and that morally we were not meeting our obligations to our most vulnerable patients, as we were not capturing their feedback. A year of searching widely for tools and methods to do this had proved fruitless, so, ambitiously, we decided to develop our own.

The Dementia Lead and the Patient Experience Manager did the initial planning. We sought likeminded and committed individuals with rich and varied expertise in local health and third sector organisations. We tapped into a common will to find ways to gather feedback and ‘measure patient experience’ of patients with cognitive/communicative impairment. We formed an initial working group and subsequently, after we submitted a winning bid to the NHS Institute’s Patient Feedback Challenge (PFC) we recruited further ‘spread partners’ (see Appendix 1)
Spread partners signed up by committing to two objectives, or 2 phases:
Phase 1 implementing their own processes to collect patient experience metrics based on Kinda Magic principles.
Phase 2 work with us to develop accessible tools to collect feedback from patients so far excluded.

We recruited a Project Officer and Impact Innovation in a coaching and facilitating role. We formed the core team but actual delivery of the project was a bigger, broader effort involving the leads of all spread partner organisations.

We involved patients and their representatives throughout via third sector organisations.

We produced a ‘call to action’ film to engage interest. Shown at numerous forums and events locally and nationally, and included in all publications, it is available on YouTube.

We communicated via the PFC web channel making information visible and available

We devised an ‘event driven’ project programme to maintain momentum; working towards each workshop meant key milestones were met. Each event re-invigorated the will and motivation and promoted further spread.

We promoted the core principles rather than a prescriptive tool; these principles became central to implementation in different forms and allowed local interpretation of tools.

We measured spread of Phase 1.

We produced tools to use with different groups of patients. Phase 2 consisted of workstreams in dementia, learning disability and stroke. However, almost immediately, unplanned but spontaneous spread of Phase 1 occurred in our spread partners’ mental health services and children’s services, highlighting the need for Phase 2 in those areas. Royal Cornwall Hospitals Trust (RCHT) led on learning disability and children’s services, PCH led on dementia and aphasia, and Coventry and Warwickshire Partnership Trust (CSPT) led on mental health.

We tested the tools with target patient groups and identified further improvements. Each workstream has been self-organised, and reports back to the wider project in workshops and meetings.

A more in-depth promotional film was commissioned by the Institute

Impacts We’ve achieved wide spread of a process that makes patient experience metrics do more than simply provide a dashboard for reporting and retrospective actions against trend data. We’ve spread a process that does that, but also makes it meaningful, engages staff, results in quick actions and improved outcomes.

We have numerous examples of outcomes in terms of:

  • improvements made in response to feedback
  • interventions when other issues have been elicited (e.g. safeguarding)
  • anecdotal evidence that staff who undertake the process value their contact with patients and reflect on what they hear when operating in their own roles
  • ward staff value, trust and respect the feedback they receive and value seeing senior non clinical managers/trainers/directors on the frontline

We’ve demonstrated that Kinda Magic principles are widely replicable across different care settings. Participants saw connections and application in areas not originally planned. Consequently, spontaneous spread into mental health units and children’s services occurred. Spontaneous spread also occurred in the Care Home sector. Brought about by the call to action and general ‘buzz’ the project created, Cornwall Council’s Adult Care and Support became spread partners and piloted the process in care homes.

We’ve given a voice to our most vulnerable patients! We’ve developed a range of tools to collect feedback from patients who previously were not being asked their views.

Measurement We measured ‘spread’ of the Kinda Magic principles. Until embedded, we regularly measured number of organisations/teams participating, and number of patients interviewed. Spread occurred into:
PCH District Nursing Service and Bladder and Bowel Service, RCHT in Eldercare, HPFT in mental health inpatient units, CWPT in mental health inpatient units. At CWPT they also used their learning from this to design a set of metrics for community mental health patients.

Spread is ongoing with new organisations asking for guidance to implement our Phase 1 process.

Key Learning Points

  • Success depends on strong leadership and organisational commitment therefore it is crucial to ensure the Board is signed up.
  • Recruiting senior non-clinical staff is challenging due to the time commitment required, however, using senior staff rather than junior staff, is one of the most powerful aspects of this process.
  • Try and recruit some who will be champions, but in our experience, some of the biggest advocates have turned out to be those who were not initially keen.
  • Support and role preparation are key.