Winners and Highly Commended for the Patient Experience Award sponsored by Picker Institute Europe

The following are the winners and highly commended nominations for the Patient Experience Award:-

WINNERS –

The Skin Camouflage Service – 5 Boroughs Partnership NHS Foundation Trust.   One in 250 people in the UK self-harm; a ‘hidden epidemic’ which we need to work in SONY DSCpartnership to effectively support across the lifespan.  The Medical Skin Camouflage Service is a pioneering project with ‘Changing Faces’ charity – developed by the Trust after securing NHS innovation funding to deliver it as part of personalised mental health recovery packages to service users across all ages.

Fifteen per cent of the UK population present with a chronic skin condition each year. About a third of these people suffer psychological distress due to low self-esteem, low confidence and stigma. They are often bullied and isolated, leading to chronic ill
health/ disability. Additionally, there is impact on quality of life for the support network/family (All Party Parliamentary Report, 2003).

Scars from self-harm are a form of chronic skin condition with the same long-term consequences but are not included in the data. Historically, medical skin camouflage creams treat dermatological skin conditions – not scarring from self-harm. They are
not readily available in primary or secondary care and not embedded in mental health recovery. However, medical skin camouflage can enhance well-being for these individuals (Holme et al, 2002; McMichael, BMJ, 2012).

The Trust aimed to offer this as a therapeutic choice within personalised, patient -centred recovery packages and to demonstrate enhanced well-being; improved confidence with potential reduction in self-harm and raise awareness with reduced
stigma.

With its simple model, the camouflage intervention with bespoke prescription creams is taught to users, supporting self-care beyond discharge. Staff and service users describe it as ‘life changing’.  Delivered by a trained team, service evaluation shows significant improvement in user/carer wellbeing; user confidence; patient experience; ability to reintegrate with activities and a reduction in clinical contact time as a result.

Quantitative and qualitative data (such as the following examples) has supported embedding the service within the recovery model as a care plan choice within shared decision-making across all ages.  98% of service users and 100% of carers reported that they felt the clinic setting within their mental health team was vital in helping them to feel safe and supported.  95% felt the skin camouflage consultation worked well – improving confidence and enabling them to engage in activities they had previously stopped due to self-harm scars.

What service users said: “I was really chuffed when children in my nursery placement did not notice the scars on my arms.”  “I went to the hearing voices group and was able to take my coat off for the first time.”  “The staff were great. I felt safe and able to expose my secret… to finally get help.”  What carers said: “As a parent, I can say it (the creams) helps young people to move on to recovery without judgement.” What staff said: “An inspiring journey and experience – learning a new skill; so simple but so life changing for the service user. I’m part of a team making a positive difference; empowering them and helping them overcome the stigma and secrecy of self-harm.”;

HIGHLY COMMENDED –

Community Eating Disorders Service – Hertfordshire Partnership University NHS Foundation Trust.   The Hertfordshire Community Eating Disorders Service is a county-wide NHS service which initially covered the west of the county and in 2006 expanded to cover the whole county. The team was set up to provide high quality community care and treatment for people with eating disorders. As the team developed, a particular goal became that of reducing hospital admission for the patient group.

SONY DSCAdmission to a specialist inpatient eating disorder unit is costly, with units charging about £470+ a day, so the ability to avoid or reduce the length of admissions brings financial benefits. Any savings can be redirected to patient care within the community team or other services. In addition, in Hertfordshire, all specialist eating disorders admissions are out-of-county which means the experience of the service user is of having to leave their home, family and social supports in order to receive treatment for the physical dangers of an eating disorder. Any reduction in the number or length of inpatient admission will mean service users are able to retain their social, familial and functional supports, building on the positives in their lives rather than having to move away from them.  Members of the team were part of the East-of-England expert reference group which in collaboration with Commissioners developed guidelines for the development of community eating disorders services across the region. The team subsequently received significant investment from Commissioners on a spend-to-save model with the aim to reduce eating disorder hospital admissions by improving the level of community provision. The result was a community team that is able to provide more comprehensive treatment for its service users and hold them safely for longer out of hospital.

Since 2010, the team’s active caseload has increased annually from 170 to 320 and offers treatment in 9 towns across the county. This means that more people with eating disorders in Hertfordshire have access to this specialist service.  The multi-disciplinary service has more than trebled in its establishment since 2006 and now includes specialist mental health nurses, psychologists, psychological therapists, psychiatrists, a dietician and support workers. The multi-disciplinary team allows us to attend to the physical, psychological, dietetic, social and financial needs of service users and their families. The service is a ‘one-stop-shop’ where the vast majority of service users are care coordinated and receive all their treatment from within the specialist service. For a small proportion of service users, we have shared care arrangements with other services such as community mental health services, learning disability and older adult services if such a partnership would better meet their needs.

Service user feedback
As an illustration of making that difference, we received this feedback from someone who had used our service:
“Treatment was the best thing I’ve ever done, it’s changed my life. I read a quote like this on a website before I came and didn’t believe it, but now I’m saying it!  I found it really helpful to be able to talk openly, to not be judged, and to be given advice where needed, gain knowledge and information I was terrified of being weighed, but it was really helpful to my treatment.  For 15 years I have been convinced I was fat, nothing else mattered. Now eating, weight, and shape is 10% of my day, 90% is friends, family, work, and life!”

Another patient had suffered with anorexia nervosa for 10 years. Following therapy her weight reached the normal range, she became pregnant (significant as menstruation ceases with anorexia nervosa) and now has a job – prior to therapy she had never worked and was drinking alcohol, bingeing and purging.

Other patients live with anorexia nervosa for years and years. Although they continue to live with the symptoms and effects of anorexia nervosa, these patients have still made a significant difference in their lives through working with our team. Through outreach we have worked with them to break the cycle of inpatient admission interspersed with supported living to help them move (back) into their own independent accommodation, to learn tasks they had never been taught as they perhaps have had anorexia since childhood (such as shopping or cooking for themselves) and beginning to work in voluntary and then paid employment. They are not cured of their anorexia but the improvement in the quality of their lives is significant.

Reducing inpatient admissions and offering treatment in the community
The team has successfully reduced the number of inpatient admissions, spending £425,000 less than the inpatient budget in 2011-12. In 2011-12 and 2012-13, the number of inpatient beds used at any one time averaged 3. The nationally expected norm as reported by The Royal College of Psychiatrists for a population the size of Hertfordshire is 6.6. We are therefore admitting far fewer people than would be expected and we believe are treating them in an environment which is more likely to result in a sustainable recovery – their own homes and neighbourhoods rather than an out of county hospital.

An audit of hospital admissions suggests that on average our service users are admitted an average of 51 miles away from their home which means a disruption in family and work life as well as isolation from families and friends. Out-of-county admissions also create difficulties with the inclusion of families/carers in treatment during lengthy inpatient stays. Treating service users in the community means that more service users are able to stay within their own home environment and with as little disruption as possible to family relationships and education and employment during their recovery journey.

Intensive Community Management (ICM)
The service developed a particular initiative, an innovative model called Intensive Community Management (ICM). to aid reduction of inpatient admissions. Service users with high risk and very low weight who meet the criteria for hospital admission are managed intensively in the community. Each service user in ICM can receive up to 6 face-to-face contacts from team members per week (e.g. consultant psychiatrist, individual therapist/specialist nurse, dietician, support worker x 2; family therapist) typically for up to eight weeks. After this period of time the service user will either be out of immediate danger and able to continue their recovery journey in a less intensive way with the team, or it will be clear that they are unable to continue this part of their recovery without inpatient admission. In our study of this work over a period of 18 months, 11 service users who met criteria for hospital admission, were intensively managed in the community yielding a saving of £417,000 through 927 avoided hospital bed days through this initiative alone. Although 3 were eventually admitted, 8 never needed inpatient admission at all.;

HIGHLY COMMENDED –

Maintaining Adherence – South Essex Partnership NHS Foundation Trust.   Around 200,000 people in England have schizophrenia and the cost of psychosis is estimated at nearly £12 billion in England alone. Adherence to treatment in psychosis is an important predictor of illness trajectory and outcome. Non-adherence to treatment is a major problem for providers across the UK and a 12-month academic study reported that 67% of patients with schizophrenia were frequently non-adherent.  Non-adherence often leads to costly acute mental hospital admissions, removing patients from their support/recovery networks (mental health patients use twice as much acute hospital resource as the general population). Nationally, non-adherence results in an extra annual cost of approximately £2,500 per patient for inpatient services and more than £5,000 per patient for total service use.

This project – Maintaining Adherence Program (MAP) – is a new model of care for those affected by schizophrenia, schizoaffective and bipolar disorder. The primary aim is to encourage adherence to treatment and prevent relapse to allow patients to take care of themselves away from a clinical setting. MAP is based on work in Germany by a Dr Werner Kissling and includes:
 Dedicated adherence team
 Regular non-adherence screening
 Structured and in-depth psycho-education
 Well-being activities
 Shared decision making
 Telephone/text reminder services
 Direct consultant access instead of outpatient clinics

The study retrospectively and prospectively measured patients’ use of resources including occupied bed days. Patient and carer satisfaction was measured, along with a ‘bundle’ of soft measures including contribution to recovery, improvement in confidence and social functioning, etc.  In the 18-month patient cohort (n=63) evaluated in Jun 2013 there was a 58% reduction in the mean number of inpatient bed days per patient (50.08 in the 18 months pre-MAP to 20.95 in the 18 months post-MAP).   On the validated, patient-reported Medication Adherence Rating Scale (MARS) with range 1-10, mean score changed from 5.35 (baseline) to 8.02 (18 months), indicating better adherence. On the Differential Diagnosis (DD) of Non-Adherence risk score with range 0-16, mean score changed from 10.40 (baseline) to 6.02 (18 months), indicating reduced risk of non-adherence.

Patient/carer satisfaction questionnaires were completed by 79% of the 18-month cohort (50/63) of patients about their experiences. Satisfaction was very high across all questions, with 98% of respondents reporting that they would recommend MAP to a friend/family member. Additional results, with % of clients answering ‘strongly agree’ or ‘agree’, include:
 Treated with dignity and respect 98%
 I trust the MAP workers overall 96%
 Involved in decisions about treatment 86%
 Facilitators managed groups and taught topics 98% (‘very well’ or ‘quite well’)
 Activities were useful in helping you to remain well 85% (‘extremely useful’ or ‘very useful’)

Selected quotes from patients are:
“Thank you for your time, support, kindness and expertise; but most of all for giving me the tools and working with me to achieve my goal.”
“MAP has helped me recognise early warning signs and so I can ask for help before I am in crisis.”
“I am getting my life together and I have tidied my flat and I believe that this is because I am coming to MAP.”

The MAP team have now recruited 4 Peer Workers who have gone through the programme themselves to co-facilitate the programme.;


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