RNOH PATIENT GROUP REPORT MERCURE HOTEL, WATFORD RNOH REHABILITATION PROGRAMME

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1 RNOH PATIENT GROUP REPORT MERCURE HOTEL, WATFORD RNOH REHABILITATION PROGRAMME Subject: Fact finding visit to Hotel based Rehabilitation Programme Date: 24 th January am-12pm Patient Group members: Marion Cumbers and Ruth Marcus Staff interviewed: Sapna Ramani, Therapy Lead in Pain Management and Rehabilitation; representatives from other therapies; Gill Thurlow, Nurse Consultant; Carol Bates, Mercure Sales Manager Background This report is supplementary to the Jubilee Rehabilitation report of our visit on October 23 rd In the Rehab report, we mentioned the Hotel option for patients who did not need nursing care. We thought it would be beneficial to visit the hotels used by RNOH, and find out how this initiative is working for patients and staff. The Rehab and Pain Management courses use the Mercure Hotel. The Active Back Programme uses the Village hotel. The Pilot course was successfully completed last April and this was followed by a further 6 programmes in April We were invited to attend the Rehab programme at the Hotel and the Programme was into its third week. Staffing There is a multi-disciplinary approach to managing the programmes. The team consists of physiotherapists, occupational therapists, a horticultural therapist, a Nurse Consultant, medical consultants, Clinical and Health Psychologists. Shaun Stacey, Interim Head of Operations, deals with the negotiations and costs of using the Hotels. Referral Process There are five Consultants who refer patients to the Rehab programme. They refer when there are no outstanding medical issues to be dealt with and the patient would benefit from a rehab programme to enable them to maximise their potential and look at methods to cope with their condition. Referrals go the Administrator who sends out questionnaires to cover their level of pain, how they cope with daily activities and mobility. No-one can attend pre-assessment for a course unless they return their form within 4 weeks. This has reduced DNA to minimal numbers. Pre-assessment The patients attend a pre-assessment talk at the Jubilee Rehab Centre where the aims and purpose of the programmes are discussed. The patients are then assessed on an individual basis with a member of the multi-disciplinary team. Following a multi-disciplinary meeting it is decided whether or not the patient is suitable for the programme (PMP or Rehab) and whether the patient should attend the hospital or hotel-based programme. They are given a range of information including the programme s Code of Conduct. Patients who require assistance of a nurse, e.g. for dressing, eating or mobility or have complex needs will be admitted to the Rehab unit. More independent patients can go to the hotel and can include wheelchair users who can transfer, dress and toilet independently. Waiting List Gill Thurlow manages the admissions list for the Hotel programme and the Rehab Unit. There are always large numbers of patients on the waiting lists for both programmes. The Hotel has a longer waiting list. Those pre-assessed in January may not attend till August. The patients for the Rehab unit would attend in April. Some patients may change from Hotel to Rehab Unit to be able to be admitted earlier, but some would prefer to wait to go to the hotel. 1 of 5

2 They could reduce the waiting list by increasing the groups from eight to twelve participants, but this would mean they would need at least another clinical psychologist and adequate therapy staff. Purpose and Structure of Course The pilot scheme to use a hotel rather than the Rehab unit started last April. The scheme has proved to be successful, not only financially (it is cheaper than an inpatient programme on the Rehab unit), but gives the patients who are not ill the opportunity to be in a non-medical environment which enhances their experience. The aim of the Rehab course is to improve fitness, increase independence and empowerment, achieve individually-set goals and improve their quality of life. The Rehabilitation programme is intended for people who have joint hypermobility or Ehlers Danlos Syndrome (EDS) which is a connective tissue disorder along with other rheumatological disorders. The course lasts three weeks, Monday to Friday. Participants go home at the weekend. The Rehab courses alternate with a Pain Management Programme (PMP) for people with chronic or long term pain which also runs for 3 weeks. The rehabilitation service is led by Dr Joseph Cowan. There are usually eight participants per course. There are generally more women than men and the course we observed was all-female. The programme includes group and one-to-one sessions. All participants have a daily individualised physiotherapy and occupational therapy session. They also attend 1:1 psychology sessions as required. In addition to this, participants are required to attend group sessions. Every morning they start with a stretch and relaxation session. They have at least one session a week doing arts and crafts, cookery or gardening. Participants have one session weekly at the Aspire centre at RNOH and have use of the Hotel leisure facilities including swimming pool, spa and gym. The Nurse Consultant holds family and friend sessions which are much valued as they help the families and the participants to understand the nature of their condition and its impact on family life. Follow up Progress is assessed by questionnaire at six weeks. Three months after the programme, the participants attend a half-day session at RNOH. They review their goals and usually meet again in one year. It is rare for a participant to go on a Rehab course again but occasionally, if they have new goals, and would benefit from another session, it is possible to return. Evaluation There is no formal evaluation at the moment, but questionnaires are used at the moment to measure a range of outcomes. The staff do receive verbal feedback from patients continually during their course and receive many positive letters of thanks afterwards. Maybe a formal evaluation process would help to promote this successful initiative, but due to the multidisciplinary approach to management, we are unsure who would be responsible for the evaluation of the programme. Observation The last ten minutes of the group s Stretch and Relaxation Session was observed. It was well received and appeared to be beneficial. Relaxation tapes were available to purchase. The Cambridge Suite is on the lower ground floor and consists of a number of rooms used by the participants for group and one-to-one sessions. There is a wheelchair lift to the lower ground floor. One of the rooms near the Cambridge Suite will soon be adapted as a kitchen and bathroom for use by participants. It will include two kitchens at different heights (one lower for wheelchair users) and a bathroom adapted for disabled/wheelchair use. This adaptation is to be paid for by the Hotel who will use RNOH therapists expertise in its planning. This is a much needed facility for participants to learn coping mechanisms for daily living, eg cooking and bathing. We were given a tour of the facilities by the Sales Manager, Carol Bates, who was very keen to be involved in the RNOH Rehab 2 of 5

3 and Pain Management programmes. She was pleased that before the first course started, the RNOH therapists gave a talk to the hotel staff to inform them of the purpose of the courses and the likely needs of the participants and their medical conditions. This helped greatly to make the partnership such a success. The Hotel staff s attitude, helpfulness and friendliness has been greatly appreciated by RNOH staff and participants. Bedrooms We were shown two rooms on the lower ground floor, one for participants who were able to cope with standard room facilities and one accessible room adapted for wheelchair use. Both rooms were large, airy, clean and well furnished, ensuite, with flat TV and tea and coffee making facilities. The accessible bedroom had alarm cords in bedroom and bathroom. The bathroom was a wet room with stool and well adapted for wheelchair use. There are public disabled toilets on the ground and lower ground floor. Dining Facilities Participants have the same facilities as any guest, buffet breakfast, lunch provided at the Cambridge Suite, evening meal in the dining room. There is a bar on the lower floor, and when the wheelchair lift broke down during the course, meals were served to all participants in the bar until the lift was fixed. Wi-Fi access has recently been made free in all areas of the hotel. Participant 1 Travelled from Norwich. Had expected a more active programme of hands-on physio., but had gained a tremendous amount from the course. She now felt less isolated and that there were others with similar problems. She will be taking home new techniques and ways of coping and will maintain contact with friends she had made on the course. She would not have attended a course at the hospital as she did not want to be medicalised. She had some problems with the accommodation, including a heating breakdown and had moved rooms four times, but it did not affect her comfort or her appreciation of the hotel or the course. She termed herself a fussy eater, but now felt more able to eat in the company of others. She had a limited diet therefore during her stay but this was her choice. Participant 2 Drove from Leicester. Had eaten nothing but chicken, chips and the occasional apple for three weeks, but that was her choice. There was a wide choice of food on offer. She is in a wheelchair and an accessible room. The toilet was a bit low for her, but the OT had provided a raised seat. The bathroom was brilliant. They had also helped her undress and get into bed when she was ill and had a bad day. There had been a lift problem. It had been out of order for one week of the current course. She was annoyed not to be allowed her own key for the lift but there were health and safety considerations involved, and though irritating to her, this decision appears to be reasonable. She said the hotel had been more than helpful and, in particular, the manager, Vaib. Nothing was too much trouble, you just had to ask. Participant 3 This participant was quite emotional about what she had learnt on the course. The RNOH people are lovely and very helpful. She liked being in a group of people with similar problems and had never met anyone like herself before. On this programme she had individual physio sessions three times a week. The physios are amazing; they listen to your problems with specific muscles, and then tailor their intervention to what you need. If the next time it has hurt or isn t right, they try something else. The OTs watch what you can do and your posture. Viv in particular is skilled and subtle, and uses her observations and knowledge sensitively aiming at you getting enjoyment out of what you can do. Her time was well filled, interleaved with breaks, when she could go out for walks to the spa or pool. It has been an honour to be with this group. They had 3 of 5

4 been fantastic and all got on well together. The food was luxurious, though she couldn t eat much of it because of her poor digestion. The chef had offered to cook whatever she wanted. Her accommodation was very comfortable. When asked how she would grade the whole experience out of 10, her answer was 100 fantastic. Participant 4 had EDS diagnosed three and a half years ago when she snapped her Achilles tendon. Had not realised what was wrong prior to that, and just accepted she was different from others, i.e. double-jointed. She found walking very difficult and has now learnt how to walk differently with help from orthotics. She has found the course wonderful, had learnt how to pace herself, the therapists are fantastic and the staff at the hotel very friendly and helpful. The meals were very good. The group gelled together very quickly and have helped each other and she has had no problems. Participant 5 Found course very helpful and all the group get on very well together. She does not have hypermobility or EDS but does have an allied condition. She has Symphysis Pubis Dysfunction discovered with her second pregnancy. The course was still very useful. She will continue to have physiotherapy at Bolsover Street after the course. Her only complaint was that she requested Kosher meals. The first week she had a good choice, but in the last two weeks she had little choice and was given the same food every day, e.g. potatoes and spaghetti for breakfast. The fruit was good. She did not want to complain. After this interview, it was mentioned to Carol Bates who said she would discuss the matter with the chef. The food was purchased from a Kosher supplier and the guests were supposed to have a choice. Comments and Recommendations 1. The hotel facilities were very comfortable and the quality of the food good. 2. There is concern that a participant requiring Kosher meals was not receiving a reasonable choice of food and was offered inappropriate food for breakfast. We are concerned that there may be similar shortcomings for Halal and other special diets, e.g. gluten free, vegan etc. The Hotel needs to reassure RNOH that this problem is addressed. 3. We were pleased that there were imminent plans to adapt one of the bedrooms near the Cambridge Suite to a kitchen and bathroom for use by participants during their programme. 4. The content of the programme, the literature provided and follow-up scheme was very good and all participants seemed to find the course very beneficial. 5. The Friends and Family session run by Gill Thurlow was very well received. One participant asked if it could be expanded to include carers sessions with a deeper focus on practical help, but we understand that, if possible, carers are welcomed. 6. The therapists were aware of the long waiting list, and felt they could increase the numbers of participants from eight to twelve but cannot do this without an extra Clinical Psychologist post. Is it possible for the Board to look at this issue? 7. This scheme is quite unusual in this country, and could be a wonderful asset to the RNOH especially when they are seeking Foundation Trust status. 8. There needs to be a formal evaluation of the scheme and although they do use questionnaires, and it receives many plaudits from participants, this may not be adequately 4 of 5

5 Conclusion recognised by the Trust. Maybe they need a Champion to promote its services so that the Trust Board, Patient Groups and the public are well informed of this great initiative. We hope this Report helps in its promotion. We were very impressed with the commitment and enthusiasm of the team involved in the programme. We hope that the Hotel based courses will continue to flourish and enhance RNOH s reputation, and we thank all the therapists, Gil Thurlow and Sapna Ramani and hotel staff for their warm welcome and the time devoted to our visit. Response from Gill Thurlow and Sapna Ramani Both were pleased to read the report which they found to be extremely positive and complimentary about the programme. They have made some corrections, comments and suggested amendments under the headings: staffing, referral process, waiting list, purpose and structure of the course and comments and recommendations. These have been duly incorporated by the Patient Group into this report. 5 of 5