Work Foundation Psoriasis Expert Summit 11th October 2011 Residence 1, House of Lords, SW1A 0PW

Background The Work Foundation Psoriasis Expert Summit was held courtesy of Lord German, the Co-Chair of the Liberal Democrats Work and Pensions Policy Committee, at the House of Lords on 11th October 2011. The Summit, sponsored by Abbott, was called to enable experts from the NHS, patient groups and politicians, to come together to discuss what levers can be used to increase prioritisation of appropriate treatments and care for psoriasis patients in order to achieve good health outcomes; ensuring that current initiatives, such as the new emerging NHS structures, the NHS Outcomes Framework, and Quality Standards suitably account for, and prioritise services for, people with psoriasis. The objective of the summit was to provide practical, focused recommendations, endorsed by the attending experts, for policy makers and implementers, including commissioners, so that psoriasis patients are provided with appropriate care, service provision and treatment to ensure they can return to or remain in the workplace. The recommendations are set out below and are submitted to the Department of Health for their consideration.

Summary of discussions The link between physical and mental health is particularly clear for psoriasis the psychological effects of the condition can be just as much a barrier to working for patients as can the physical symptoms and the lack of awareness amongst co-workers and employers. The lack of understanding of psoriasis as a condition among clinicians, employers and the public is a cause of great concern. Too little is done at present by decision makers to integrate health and work strategies some attendees felt that psoriasis patients are not sufficiently supported to remain within the workforce. The current NHS reforms, whilst prompting concerns from some stakeholder groups, may represent an opportunity to address some concerns around the psoriasis patient experience.

Conclusions The attendees at the Work Foundation Psoriasis Expert Summit reached the following conclusions: Patients with psoriasis need access to dedicated, integrated, psoriasis services to enable them to access the right services at the right time. Best practice shared during the expert summit highlighted that the integration of multidisciplinary teams of clinicians is essential for providing a coherent psoriasis care pathway. Psoriasis is included within the proposed library of topics for NICE Quality Standards. A NICE Quality Standard on psoriasis must be taken forward to ensure patients with psoriasis get equitable access to high quality services. Levers in the current NHS reforms, such as the establishment of Clinical Networks, should cover chronic skin conditions with groups of specialist health professionals and organisations working together to ensure the equitable provision of high-quality and clinically-effective services for psoriasis patients. The link between psoriasis and stigma must be recognised. Attendees regarded stigma as a major barrier to obtaining and maintaining employment. The focus must be breaking down the barriers to work. Clinical understanding of psoriasis needs to be improved through education and training; in particular for GPs via the undergraduate medical education curriculum and also through an expanded essential dermatology programme at Vocational Training level. Heightened awareness and understanding of psoriasis amongst clinicians, the public, in schools, the teaching professions and employers is essential. A comprehensive demographic study of the psoriasis patient community, and of public perceptions of psoriasis, needs to be undertaken for the first time, to provide employers and clinicians with accurate information of how best to support the needs of patients, and to raise public understanding of the challenges facing psoriasis patients. Collaboration between DWP and the four health administrations is essential to take up learning and best practice that support back to work initiatives. Joined up working is essential. The Expert Summit calls on the Department for Work and Pensions and the Department of Health to produce a joint-departmental health and work strategy, that addresses how DWP funding can be used to support the NHS and health services in supporting patients to remain in work or return to work.

Priority Actions The priority actions endorsed by the attending experts for the Government and NHS commissioners are: To actively support and prioritise the development of a NICE Quality Standard on Psoriasis to ensure patients with psoriasis get equitable access to high quality services. To actively support and prioritise the establishment of a Clinical Network for dermatology to ensure that specialist health professionals work together to ensure the equitable provision of high-quality and clinically-effective services for psoriasis patients. 2

Work Foundation Psoriasis Expert Summit Summary of discussion

Present Steve Bevan - MD, Work Foundation, Chair of Work Foundation Psoriasis Expert Summit Lord German - Room Sponsor, and Lib Dem Work and Pensions Policy Committee Co-Chair Liz Parrish - Chairperson at Dermatology Council for England Patricia Ramshaw - Clinical Nurse Specialist Ray Jobling Chair, Psoriasis Association Nick Evans - NHS manager (retired in September but retains links to dermatology services) Dr Sandy McBride Consultant dermatologist, Royal Free Hampstead NHS Trust Amy Hefford Abbott Dr Stephen Kownacki - GPwSI and Exec Chair PCDS Will Blair Weber Shandwick

Introduction and welcome 1. Lord German opened the meeting and welcomed all present to the House of Lords. 2. Steve Bevan provided a short background to the focus and activities of the Work Foundation. The key focus at present was to look at ways in which the benefits and work systems can be more collaborative in their efforts to get people into good work and keep them there; in this context he mentioned the new Fit Note. 3. The Work Foundation has conducted much research and focus on long term conditions, which impact on peoples ability to work, such as musculoskeletal diseases (MSDs), and has found that there was significant commonality between these conditions. 4. The common factors between long term conditions, such as psoriasis, included the fluctuation of the condition, which made them more difficult for clinicians (and employers) to understand. Another common factor amongst long term conditions is that they can impose a psychological burden. Reference was made to the recently published Body and Soul report. 5. The focus tends to be on what people cannot do rather than what they can do. The challenge at present appears to be getting clinicians, patients and commissioners to join up care services to manage these long term conditions, which is particularly important in order to maintain a healthy working population.

Barriers to working for people with psoriasis 6. The issue of the stigma of psoriasis was discussed as a significant barrier to obtaining and maintaining employment. The complex nature of stigma was highlighted. Stigma was broken down into the felt stigma on the part of the patient, who experiences the anticipated

threat of negative social reactions from others, within a cultural and social environment where potentially stigmatising and damaging connotations abound. 7. The psychological aspect of psoriasis was also raised as a significant barrier, with attendees citing anecdotal evidence that those experiencing skin conditions can also exhibit clear patterns of low self esteem and lack of self-worth. An attendee stated that patients often find it difficult to put into words what they feel while clinicians can be poor at picking up psychological symptoms. It was mentioned by an attendee that even someone who experienced remission from psoriasis would still experience the psychological consequences of the illness for some time to come following the successful treatment. 8. Some practical barriers to work for psoriasis patients were discussed such as the requirement to wear a uniform or difficulties bending. An attendee pointed to the example of NHS staff with psoriasis, for whom the condition may even inappropriately prevent work in certain areas such as theatre or midwifery. 9. What could the NHS and other employers do better? Employers occupational health services were discussed as usually being very inadequate at taking account of the needs of those with psoriasis often taking far too long and not able to provide an effective solution. One attendee suggested that the problem with OH is that it has a limited knowledge base, no defined standards, and is operating from a risk-management perspective, rather than a proactive approach to management of employees with psoriasis. But it was hoped that work by the Work Foundation looking at recommendations for occupational health services following on from the Boorman Report would lead to improvements. 10. From a patients perspective, the range of treatments, which often have to be administered a number of times daily, as well as the number of visits to hospital and the GP, which are very rarely able to be arranged for outside working hours, may be damagingly disruptive to work commitments. In many areas, out of hours services, for example Light therapy, have been scaled back in the past year. The uniqueness of the condition 11. A key point discussed by the expert summit was that psoriasis has some specific problems and complex needs differentiating it from the rest of the field of dermatologyi . There is a clear feeling by some within the NHS, that dermatology services are not seen as priority areas for providers and PCTs, with the one exception of skin cancer. As a long-term condition, psoriasis patients become, over time, experts in their own care, which makes their interaction with clinicians different to those patients who present with any type of oneoff illness or incident. Therefore, the importance of the availability and ease of close consultation with psoriasis patients on the management of their condition is vitally important. 12. The treatment of psoriasis at present does not seem, in many parts of the country, to take an integrated approach there should not be an arbitrary distinction as to whether psoriasis treatment services are the domain of primary or secondary care, but rather an integrated care pathway that brings together a variety of clinical teams at all levels, in the way that other conditions, e.g. diabetes, are managed.

13. The lack of any comprehensive study into the demographic profile of psoriasis patients was cited as regrettable, and an area of study that should be pursued, so as to empower clinicians and patients alike with the greater knowledge of the condition and means to respond to it. 14. The importance of empowering patients to be able to determine the efficacy of their treatment was discussed, as it was felt by those who had psoriasis that many patients simply continued taking repeat prescriptions of creams and lotions that were ineffective and neither the clinician nor patient reviewed the situation and thus suggested another course of treatment. There was a suggestion that this was partly due to clinicians being more willing to tackle perceived easier conditions, , as well as a wider issue coming through from patients about a lack of knowledge amongst GPs about psoriasis. Equity of access to care for psoriasis was a key concern, together with open access. The expert summit felt strongly that patients should have access to multi-disciplinary services for psoriasis when patients need access. Addressing the challenge getting people back to work 15. An attendee raised that the NHS was not incentivised to get people back to work, and that there was far too little collaboration so far between the Department for Work and Pensions (DWP) and Department of Health (DH). The challenges were regarded as budget silos, with separate pots of money for DWP, the NHS and local authorities This is particularly crucial when one considers that these are Whitehalls biggest spending Departments, with the DWP annual spend at 160 billion and the DH at 112 billion per annum. The new NHS Outcomes Framework was to be welcomed on this front, in that it does list work as a health outcome. 16. However, it was highlighted that at present the National Institute for Health and Clinical Excellence (NICE) is not allowed to take into account the wider societal impact when assessing the value of treatments for use in the NHS. 17. The example of the psoriasis service at the Royal Free NHS Trust was cited as a good example of best practice care in this area, where all clinicians fully recognised the value of work and its importance as a health outcome. The service integrates Rheumatology, Dermatology and Psychology, to provide patients with a clear and accessible care pathway such as getting appointments in the various departments aligned on the same day and time, rather than requiring the booking of multiple appointments and significant time off work. The service focuses on patients having open access and accessing when care is required. Part of the psychological assessment currently included outcomes with one outcome being employment; the huge benefit to patients of getting back to work was stressed. The need for a holistic approach with early intervention was regarded as key. A point was made by an attendee about the importance of supporting patients and their families by helping those with psoriasis stay in or return to work, through appropriate collaboration with NHS and employers. 18. The lack of clinical knowledge of psoriasis amongst GPs was cited as an area for clear improvement, and this should be tackled at its root in the undergraduate medical education curriculum, also through an expanded essential dermatology programme at Vocational Training level.

The opportunity and challenge of the Health and Social Care Bill 19. The Governments Health and Social Care Bill, currently being considered by the House of Lords, has raised a significant amount of media and political debate, and attracted significant criticism from various clinical and expert sources, and patient organisations. Nonetheless, the Bill looks likely to receive Royal Assent in Spring 2012, and so all stakeholders are preparing for this. For psoriasis patients, the most important question is, whether the Bill, when it becomes law, will it present an opportunity to improve the provision of services. 20. The group touched on this issue and some attendees felt there were opportunities for this in the form of breaking down the silo culture between clinical departments, allowing for integrated, cross-disciplinary care for psoriasis patients. Worries were however expressed that psoriasis services might suffer if local commissioners did not recognise psoriasis as a priority, unlike for example cancer services which were prioritised as driven by targets. 21. There was significant learning and expertise to be gained from looking at how each of the four UK health services operate some examples of good practice with regard to dermatology were cited in Scotland (where it was mentioned that phototherapy was in some cases provided at home). 22. If the Bill can assist in starting closer collaboration between DWP and DH then a good opportunity will have been taken. The importance of getting people into good work was also noted, as those who feel under-utilised in their jobs soon lose morale and enthusiasm for their roles. The need to focus on breaking down the barriers between healthcare and the work place was stressed by an attendee; with long-term conditions in general there was often significant underemployment.

Key priorities for improving the deal for psoriasis patients Heightening awareness amongst the public of the issues facing people with psoriasis Access for patients to a dedicated, integrated, psoriasis service A greater public understanding of psoriasis and the stigma attached to it Mandatory Quality Standards for commissioners on psoriasis services Targeted awareness raising in schools, the teaching profession and employers those who can make a critical difference A new DH requirement for a clinical network on the delivery of skin services, along the lines of existing cardiovascular clinical networks Collaboration between the DWP and the four country health services to take up learning and best practice from the devolved health services to support back to work initiatives

However patients with severe eczema can also suffer prolonged and psychological effects requiring similar attention.