Two Presentations Given to the All Party Group on Skin at the House of Commons

20 Journal of Tissue Viability Vol 6 No 1

TWO PRESENTATIONS GIVEN TO THE ALL PARTY GROUP ON SKIN AT THE HOUSE OF COMMONS Nicky Cullum1 and Carol Dealey2 1 2

Research Fellow, Centre for Policy Studies, York CNS Tissue Viability, Moseley Hall Hospital

INTRODUCTION The Society has joined the National Skin Care Campaign, of which the All Party Group is a very significant component. MP's who comprise its membership, together with representatives of organisations and societies with interests in skin care meet at the House of Commons four times a year. The Society recently gave two presentations of which a summary follows. As a result of these, the Society has been asked to provide an information leaflet on pressure sores which will be distributed to all MP's.

DR CULLUM Dr Cullum explained that there were two main types of chronic wound, both of which had huge human and financial cost implications: bed or pressure sores; leg ulcers She explained that the former was caused by illness and immobility and was common in the elderly and those with spinal injuries amongst others. A survey carried out in seven general hospitals in the UK had shown that the prevalence of such sores was high, with a quarter of patients having sores. She noted that the number of sufferers in the community was not known. Dr Cullum explained that bed sores were not only very painful and distressing for the patient, they also prolonged the rehabilitation phase and in some cases could cause death. She noted a recent criminal case brought following the death of a patient through pressure sores which were felt to have been avoidable. Dr Cullum also emphasised that the cost of preventing and treating pressure sores was very costly for the NHS, being in the order of £250 million a year. The key message however was that pressure sores were preventable with proper medical and nursing care. Moving on to talk about leg ulcers, she pointed out that these sores were very common, with two people out of every thousand in the country having such a sore. Sores were very common in the elderly, with two out of every hundred elderly people having leg ulcers. Like pressure sores, leg ulcers too were

very costly, in the region of £300 million every year. Leg ulcers were very painful, depressing and also very isolating. She pointed out that some people had leg ulcers for up to fifty years, but again a large proportion of wounds were curable. Leg ulcers did, however, tend to recur. Dr Cullum then moved on to talk about the Tissue Viability Society which was formed in the early 1980s, its main aims being to raise awareness of effective methods of preventing and treating chronic wounds. Training and education of healthcare professionals, NHS users and carers etc was very important in achieving both aims. The TVS had 1,500 members, both in the UK and overseas, and membership was multidisciplinary and included doctors, nurses, physiotherapists, occupational therapists and podiatrists. Baroness Masham was their patron. She reiterated that emphasis was placed on increasing training and education and that the TVS was trying to cascade knowledge to the NHS and the independent sector via the Society's bi-annual conferences, Journal and study days. Research has shown that education leads to a decrease in the incidence of pressure sores. The TVS had canvassed its members prior to the current meeting and had ascertained the main burning issues to be i) lack of provision and support for continuing professional education. ii) access to items, such as pressure relieving equipment. Dr Cullum went on to explain that the three year training programme required three days every three years. However, the quality of such education was not assessed and it was incumbent upon employers to provide further education. This was of variable quality, usually patchy and often non-existent. It had been found that between a third and a half of delegates at the TVS conferences paid for themselves to attend and they attended in their own time. TVS free study days were now booked up one year ahead. She ended by asking rhetorically what could be done and felt that some sort of mechanism with which to impress employers with the need to recognise their

Journal of Tissue Viability Vol6 No 1 own responsibility for training staff was necessary - without this targets could not be met. MRSDEALEY Mrs Dealey then talked about the specialist equipment needed for the treatment of the above conditions and explained that specialist mattresses and beds were also essential for the prevention of pressure sores. The selection of such equipment was very difficult, however, with ten different types of equipment but over seventy different brands and a dearth of research into their use. There were no guidelines, despite there being a large number of things to consider such as: 1. The degree of risk of developing pressure sores.

2. The number of hours spent in bed. 3. The height of the bed and/or chair, which is relevant when moving from one to the other. 4. Whether the surface impeded movement. She noted that in most areas there were no specialist nurses to give guidance and explained that the funding of equipment in the community was a significant issue. 'Care in the Community' indicated that a bed/mattress must be part of the resource package when a patient was discharged into the community. Lack of suitable equipment in the community led to a backlog of patients waiting to be discharged, in turn leading to a shortage of beds in hospitals. She went on to point out the potential problems when a patient was discharged to a nursing home such as who would pay for the bed and noted that there had been a document published recently on this problem, but the issues had been 'fudged' and no authoritative solution provided. She felt that a payment awarded to nursing home owners, varied according to the needs of individual patients, would help clarify the situation.

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studies were very expensive and whilst the pharmaceutical industry was generally supportive she felt that they would understandably baulk at funding a study in which their products would be compared with competitors. There was a need for help with the funding of independent studies. Mrs Funnell, Director Skin Care Campaign expressed her view that despite huge increases in management in the NHS, there were still problems with administration, and that the documents published did not translate into good clinical practice. Mr Frank Cook MP cited a personal experience and his surprise at the length of time needed for skin tissue to grow back. He explained that his cousin had had a similar wound to his own for four years. He queried the figure of £250 million (the cost to the NHS of pressures sores) and where this figure had come from and how it was proved. In reply Dr Cullum said that a project had been funded by the Department of Health to promote awareness of pressure sore incidence and this figure had not been disputed. However, it was incumbent on employers to take corrective action and when finances were stretched, training and education were the first to go. Mr David Congdon MP accepted that training was invaluable but asked what it would actually do- what would be done differently and how would it help to decrease incidence of these wounds? Dr Cullum referred to a specific awareness study which had been undertaken in an ICU in a Birmingham hospital. This study had heightened staff awareness of pressure sores and this alone had led to a decreased incidence of the sores. She said that obviously not every pressure sore could be prevented. However, looking at the patient's skin, picking up on early signs and being more alert to available specialist equipment all helped towards an attitude of recognising patients at risk. In turn this enabled the recommendation of specialist equipment to prevent sores, rather than recommending equipment because the patient had sores. Training was vital in enabling staff to recognise the degree of risk and assessing the situation before actual damage occurred. She also pointed out the simple things like paying attention to diet, mobilising the patient more and not leaving them in a chair all day were brought across during training.

Questions Professor Friedmann, Royal University Liverpool Hospital commented that both talks had reinforced the things he saw as a consultant dermatologist. He agreed that there was a need for training, and that there was great variety in the quality of dressings provided for nurses in the community. He noted that his hospital/department had laid on a course and offered it to nurses. The hospital wouldn't give them study leave, nor pay the heavily subsidised £10.00 registration fee. Further more, it said that they didn't need training anyway! He also pointed out that there was a lack of standardisation, with a large number of products available but very few items actually placed on the prescribed list. He explained that this led to the problem when a patient was discharged with a certain type of dressing which GPs were unable to get hold of and therefore had to use the next best thing.

Ms M Price, Brighton, referred to a study which had shown one in five people in her hospital suffered from pressure sores, which had surprised the Chief Executive who had remarked that pressure sores were 'an Eighteenth Century problem'. She agreed that both doctors and nurses needed to be educated. She referred to her hospital which had previously had no system for dating ordinary mattresses, which only had a lifespan of five years.

Dr Springett, University of Brighton referred to the relatively few studies in this subject area. She pointed out that clinical

Mr David Congdon pointed out that the Chief Executives of hospital Trusts should be targeted, since if patients stayed

22 Journal of Tissue Viability Vol 6 No 1 longer, neither the Trust nor the purchasing authority were able to achieve their aims. Dr Cullum said that many Chief Executives were actually very interested in this subject but the cost of education programmes, both in financial and staff terms, made it very difficult. Ms L Stone, an RGN, cited a research project the aim of which was to develop a model for education in dermatology. The project had to fund the replacement costs of those staff who attended. She pointed out that one nurse away from the ward led to increased pressure on the other staff members. Dr Cullum accepted that staff replacement costs were very expensive and that staffing levels were very tight. Mr Longland, NES, noted that there were a lot of 'echoes' in all skin diseases, namely lack of training and resources. He pointed out that the problems could not be 'drowned in resources' as the problems were too big. There was a need for an efficient way to allocate resources. The Chairman, David Condgon MP, then introduced John Dart of the Dystrophic Epidermolysis Bullosa Research Association (DEBRA) explained that Epidermolysis Bullosa (EB) was a very rare condition, and that he represented the patient support group set up to help sufferers. He went on to say the EB gave lie to the theory that dermatological conditions were not serious. He explained that EB was a genetic condition, and that there were some 3-5,000 individuals in the UK who suffered the effects, namely blistering of skin and mucous linings at the slightest knock. There were different forms of EB, causing symptoms ranging from pain, disability and disfigurement to death. EB Simplex was the simplest form of the disease, which occurred on hands or feet. These sufferers were probably the 'lucky ones', but this often stopped people from seeking treatment. Strophic EB, in contrast, could cover the whole body and cause scarring leading to very expensive dressing changes. It was often necessary to soak pyjamas off where they had stuck. Three levels of dressings were usually used, possibly more. Inspecting the wounds and applying dressings was a very time consuming task, typically involving inspecting new blisters, bursting blisters and then applying dressings. This could take up to one hour every morning. It was very distressing for children due to physical incapacity and some disability in addition to being aesthetically unpleasant. It could be life threatening, both for children and adults. Junctular EB was fatal in most forms. Children tended to die within the first year of life, with the disease appearing fairly minor at first but skin damage later becoming very serious. He told of one child he had known who had weighed less when he died than when he was born.

The first parents knew of a child with EB was when it was born, In some cases EB was present at birth, with skin being missing. Families needed external help and advice and DEBRA had been founded in 1978 by a group of patients with this in mind. Sufferers and their families felt very isolated. DEBRA was essentially a self-help group but also funded medical research and other work. It was one of the more active support groups in the area of dermatology and genetics and there were also European groups. The Association provided services to help parents and professionals to cope with the disease. The expertise needed in dealing with EB was not available in mainstream medicine and DEBRA was a centre of excellence. Mr Dart felt that one of the most valuable things DEBRA did was to help, with a nurse, to provide expert first-hand advice to parents. The nurse visited children in hospital and showed parents the do's and don'ts with dressings and taught them the major care jobs. Parents liked the fact that the nurse was 'their' nurse, funded by a voluntary organisation. She provided a bridge between the health service and sufferers' families and could pass information and tips between families around the country. Mr Dart added that in addition to this full time post, DEBRA had since appointed a part-time physiotherapist, a part-time dietitian and a part-time adult helper. DEBRA was also very fortunate in that it had very good links with StThomas' and Great Ormond Street Hospitals. Staff funded by DEBRA fitted into the hospital system with a proper multi-disciplinary team. In terms of medical research, he said that people looked for some hope for the future. Over £1 million had been spent on research, and was it very much more focused now than it was originally. However, it was difficult to translate the identity of genes into treatment. Initially fundraising had been very strong but was now getting quite difficult. He then went on to talk about opportunities for the future and felt that if the present pace of scientific advance could be maintained then there would be effective and lasting treatment by the end of the decade. Much of the scientific work was undertaken by British teams - centres of excellence led to the basis from which new treatments could be put into practice. There were two main threats, the first being the health care system itself which was not geared up to deal with such a rare condition. Furthermore, the way the health service was being developed failed to make allowance for reliance by people throughout the UK. The replacement for an outgoing consultant might not have same interests as the predecessor. DEBRA had hoped that trusts would change the situation, but 'the jury was still out' on this. There was little recognition that hospitals saw EB as a significant new earner, indeed there were some instances where people had had to fight quite hard for the particular level of treatment required.

Journal of Tissue Viability Vol6 No 1 He noted that it was not entirely clear that being seen as a revenue earner was in the best interests of patients. There was a need to have centres, but what was also needed was professionals caring for EB' ers to be able to develop expertise wherever they are. Where they were funded by DEBRA this was not a problem, but he questioned whether this should be happening since, if hospitals didn't get patients in and therefore earn money, it prevented the possibility of locking them into providing treatment. There was currently no system in the Department of Health to help register which medical teams had interests in rare disorders, thus new child or adult sufferers going to a dermatology department and finding professionals with adequate knowledge was a hit and miss affair. He said that it would be helpful to have contact points. The second threat was the transition from research into treatment. The knowledge about the genetics ofEB had grown dramatically but there was obviously a need to tum this knowledge into treatment. There was concern that EB was not a big enough problem to scale-up work carried out into products which are readily available. No product had yet been specifically developed of the treatment of EB. There was a basic premise for treatment needing to move from the laboratory to the hospital and this caused a great deal of concern. Discussions with the pharmaceutical industry were needed to deal with this problem before it arose.

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Mr Dart agreed that it was very difficult. Those on benefits could obviously claim the costs back and receive help with fares. There was an increase in carcinomas, and unnoticed skin cancers were one of the major causes of death.

ALL PARTY GROUP ENQUIRY The All Party Group is to conduct an enquiry entitled An Investigation into the Adequacy of Service Provision and Treatments for Patients with Skin Diseases in the UK' and readers are invited to submit written evidence to the Society Secretary. Views are invited on the following: Are patients able to access the services and treatments which they need, when they need them? In what ways are they not able to do this and why not.? Do patients make the most effective use of the resources offered by the primary health care team and do they find the service provided by GPs, pharmacists and community and practice nurses relevant to their needs? Does the delivery of primary health care services make best use of the skills of all members of that team, ie practice nurses, counsellors, dietitians and pharacists? What are the problems associated with providing relevant and understandable information? Is information adequate? What are the processes to involve patients in developing their own treatment plans and to enable patients to help themselves?

One of the advances from the research was that pre-natal diagnosis was now possible at 10 weeks, much earlier than before. This testing was currently done by DEBRA, but he felt that one centre needed to provide this service. However, start up costs to move this testing out of the laboratory meant that DEBRA, or someone, would have to pay £30,000. He pointed out that any specialist service or research transition to treatment was extremely vulnerable.

What are the sources of support, information and continuing education for health care professionals? Do these enable the non-specialist to keep up to date with new data and developments?

QUESTIONS David Congdon asked what the level of incidence for EB was. Mr Dart replied that it was not really known. He added that a study in Scotland had tried to identify all those suffering with EB and 250 sufferers had been located.

What impact have NHS reforms and the selected list issue had on research and development?

Mr P Longland, NES, queried whether there was a problem with 'ghetto-ising', and noted that it was probable inevitable due to travel costs.

IN-VIVO PRESSURE MEASUREMENT: Scientific, Commercial and Clinical Aspects 2rd/4th April1996 The Manchester Metropolitan University Crewe and Alsager Faculty Organisers: Caroline Jordan,Peter Dabnichki. Sponsors: Novel gmbh

What problems are encountered in developing a comprehensive provision of care both in terms of hospital based services and primary care?

What impact has the current revision of medical education programmes had on education?

The emphasis of the meeting will be on informal discussions incorporating the following topics: Footwear - Clinical Studies - Modelling - Tissue Viability - Ergonomic Applications - Methods and Measurements - Other related areas. This event will host a meeting of the recently formed Foot Pressure Interests Group. For further information contact: Caroline Jordan Tel 0161 247 5650, Fax 0161 247 6375