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Huntington’s Disease relocation engagement Summary of Feedback and Responses January/February 2015 LPT is proposing to move its specialist Huntington’s Disease inpatient and community services from their current base, at Mill Lodge, Kegworth, to a new purpose-built facility on the site of Stewart House, where we currently provide mental health rehabilitation inpatient care for adults with complex mental health needs. The rationale for the move was set out in an engagement document, Proposed change of location for Huntington’s Disease service from Mill Lodge, Kegworth. We undertook an engagement programme between 17 November and 17 December. This was publicised across various media include face to face, via letter, stakeholder briefings, emails and internal and external news announcements as well as press and social media. An engagement document and Easy Read summary was produced and posted to referrers, and made available at key sites, at briefing meetings and online. Engagement activity included four briefing sessions: 2 December – at Mill Lodge, Kegworth 3 December – at Rutland Volunteer Centre 9 December – at The Peepul Centre, Leicester 10 December – at Stewart House, Narborough This was complemented with the option of completing an online or printed survey or feeding back via email, phone or letter. We received feedback from 16 people who attended events, two people responded via feedback forms, one via the feedback email account, nine via Survey Monkey and two via email to the service. The majority of responses support the planned relocation. One strong theme emerging from feedback is a request to retain the name Mill Lodge for the HD service. Responses from family members have been unanimously in favour of the move, two staff members do not support a move away from Mill Lodge and one other staff member agrees a move from Mill Lodge is necessary but feels care of patients should not be from a specialist unit. One respondent, in feedback around the engagement process itself, expressed disappointment at the lack of opportunity to be involved in the design of the new building. Parish councillors from Kegworth are very keen to be kept up to date on the process. While their feedback indicates they understand and support the move of the service to more suitable accommodation, they have concerns for the future of the building and any impact this might have on the community in Kegworth. Total number of responses At engagement events: 30 LPT Staff: 1; Service user: 1; Relative/carer 7; Healthcare professional: 1 Other: 6 Number of attendees at engagement sessions Number by online survey 11 0 0 5 9 2 December – (Mill Lodge) 3 December – (Rutland) 9 December – (Peepul Centre ) 10 December (Stewart House) Number by tear-out page of document 0 Number by email 3 (includes two from same respondent) Number of forms from meetings 0 Responses via feedback form (printed) Number of letters 2 0 Number of telephone calls 0 Number of requests to become member 0 1. Do you support the outlined proposal for the relocation of our Huntington’s Disease service? Online survey and written response combined Number answered 13 For Against 11 2 SUMMARY OF COMMENTS/QUESTIONS AND RESPONSE Reasons Given for OPPOSING move to Stewart House Purpose-built unit in lovely location with all facilities on hand, individual rooms and units ideal with different stages of the disease, from units for assessment and end-of-life units. Response Mill Lodge was in fact not purpose built for HD and there have been a number of issues associated with the design of this building in the clinical management of this patient group. It’s accepted that the community feel of Mill Lodge was an asset but the Trust faces issues with isolation and this is a single unit on its own where we must provide safe clinical cover. By moving to the Stewart House site we can share nursing cover and ensure that we have additional staff when we need them. This is currently difficult for us as the service is a distance from other services. Recruitment is a major problem for us at Mill Lodge and ongoing issues with recruitment are not good for the quality of care we aim to provide to our patients. The transport options for many staff and visitors at Stewart House should be easier than at Mill Lodge. This proposal is about bringing people and services together, i.e. an existing 30-bed mental health rehabilitation unit, together with a new 14-bed unit designed and built specifically to meet the needs of patients with Huntington’s Disease. The Stewart House site shares the assets of a lovely location and is very much an integral part of the local community. Funding the necessary improvements needed to bring facilities up to date at both sites is not viable. We see this as an opportunity to take the very best features of the Mill Lodge service and transfer them to a new unit where we can use resources to improve the quality of care for the immediate and long-term future. I agree Mill Lodge is too isolated from the rest of the mental health service. A majority of the patients I feel could be managed in residential/nursing care. Some of the more complex patients have issues that require behavioural intervention, which could be added to the Willows. Any other issues could be better managed via crisis team. Crisis team should be better equipped to deal with these patients. Perhaps joint working with social services would be another option as the needs are often social affecting mental health. Due to the progression of the disease process for some patients with Huntington’s Disease it has been proven difficult to treat, clinically manage and place this group within other services. The patients who are nursed within the Mill Lodge unit are admitted for assessment, review and a structured multi-disciplinary team approach to enable them to return to wider community. Some patients, due to the severity of their mental and physical health problems, benefit from the specialist nursing team who have the knowledge base to manage the most complex of patients with Huntington’s Disease, through to the end stages. With regard to the patients being managed by the crisis team the very nature of Huntington’s Disease makes it very difficult to manage patients without the familiarity and routine of a team they know, and this is achieved by early intervention of the community HD team who work with patients to address their needs and support them throughout the Illness. We believe we are one of only three specialist NHS Huntington’s Disease service providers, and we have out-of-county patients from across the Midlands. We want to build on the quality of this service and would not wish to dismantle the expertise, care and reputation we have built. In order to achieve this we need to ensure the service is sustainable. Comments in support of move We appreciated having the opportunity to see the proposed plans and hear of the plans to achieve as smooth a move as possible for Mill Lodge patients. Fantastic idea, that site will be great for developing. I support the proposed relocation to Stewart House wholeheartedly. A good case has been made. It makes such obvious sense from access, staffing, nursing, economic and estates reasons that I am tempted to ask why this decision was not made long ago. Moving to a more central site has got to be Thank you for the supportive comments, we agree that this proposal, if it proceeds, will allow patient and staff needs to be better met, both now and into the future. better for families when visiting. I look forward to seeing the service grow as it starts in its new home. Good luck. You have a centre of expertise here and this is our legacy. I like the idea of people being brought down to watch the new building growing, it’s a wonderful one. I support the proposed relocation to Stewart House wholeheartedly. A good case has been made. It makes such obvious sense from access, staffing, nursing, economic and estates reasons that I am tempted to ask why this decision was not made long ago. OTHER COMMENTS RESPONSE Name of relocated service The name Mill Lodge to be retained. We will involve patients, staff and stakeholders in helping to decide the name of the new unit. Keep name of Mill Lodge please PLEASE could the name of Mill Lodge be retained for this new unit so that it retains a separate identity from the attached Stewart House Retaining the family/community ‘feel’ of Mill Lodge People in Mill Lodge have lived here years We feel that in making this move we can improve on and it’s like a family and if you can transfer an already excellent service. Although this is a small that we can build on it. service we wouldn’t want to stop providing it. For those people who live in Leicester, Leicestershire and We want to see a team with as little Rutland we know we already provide an excellent turnover as possible, it’s been a particular service and to continue do this we do need to make issue here for the last couple of years. some changes. NTS We are confident that the Huntington’s Disease service’s excellent staff-patient relationship can transfer with the service to a new facility that has been built specifically to meet the needs of these patients. Patients at Mill Lodge have a strong affection for the service. The very thing that people love about it is it’s in the local neighbourhood. Carers appreciate the staff and their passion for the clinical care provided. We also believe the move to the new site might well provide opportunities for patients to socialise more in the future. The Stewart House site shares the assets of a lovely location, is very much an integral part of the local community, and it has beautiful grounds which are an asset patients can enjoy. We believe the two services each provide a natural complement for the other in terms of staffing skills and patient needs. The Stewart House site also offers us the potential to develop the site and the service further. Resources, development of services Would like to see more resources dedicated As part of the process to relocate services from Mill to the HD service - full time physio, dietician Lodge to the Stewart House site, if approved, we will and OT input in the community as well as inpatients One of the two wards at Stewart House has been empty for some time. One option for Mill Lodge is therefore to move into the empty ward. Has a thorough feasibility study been carried out? review all clinical service input to ensure they are able to meet patient needs. However, it must also be remembered that there is a finite amount of resource available. The patient numbers at Stewart House have increased in recent months and there is no spare capacity available to also accommodate the Huntington’s Disease patients. The option to co-locate Huntington’s Disease and mental health rehabilitation patients in the existing Stewart House footprint was explored but was not viable from an operational, service quality or financial perspective Future proofing the new service If a patient receiving care in the community We have a Huntington’s Disease community team as becomes worse will there be capacity in the well and over last six months have been reviewing new unit to care for them? the needs of patients. We are confident that the proposal to create a 14-bed unit will provide the appropriate capacity Could more HD beds be provided but used We provide a high quality, specialist Huntington’s for other patients if demand isn’t there? Disease service and this is what we want to focus on. This is an opportunity to improve facilities for this client group going forward into the future. When developing proposals for a new development such as this it has to be financially viable, so building a larger unit for more patients is a significant risk if the extra demand cannot be guaranteed. We believe we have got the capacity of the unit right, based on our experience of demand for these services over the last few years. Stewart House is an excellent facility on a If the Trust decides to go ahead with this proposal superb and valuable site. However it has following the full business case being finalised it will suffered for some years due to its uncertain be demonstrating a commitment to the whole site. future. Narborough is obviously better Building a new unit for those people with located to serve the county than Kegworth Huntington’s Disease will not compromise our ability as it is more central and accessible. This to develop the site further in the future, should that relocation needs to be part of a whole site need to be considered. strategy for Stewart House Quality of new proposed facilities Is it a new building? Yes, the proposal is the construction of a new purpose-built building with a connecting corridor to the existing Stewart House building, allowing access sharing facilities and easy movement of staff and visitors. The proposed option obviously provides the If this proposal proceeds, subject to planning opportunity of more suitable tailor-made approval and the full business case being supported accommodation for the Huntingdon’s by the Trust Board, it will demonstrate a vote of Disease service, assuming that the new build confidence in the whole site and the services can be appropriately funded. But the future currently located there. The existing service at of the existing wards at Stewart House Stewart House would continue to provide a mental should be clarified as part of this business health rehabilitation service. case. New buildings for the NHS are to be welcomed as part of providing better care in up to date settings, improving the building stock in energy efficient and more sustainable buildings. For these reasons, and subject to the caveats outlined above, I support the case for a new building. However I would like to offer the following comments on the proposed plan. Comments on the proposed plan. 1. The location is poor in that it is crammed into a tight corner of the site hard up against the boundary. 2. The plan does not relate in any way to the existing plan of Stewart House, and as such is an architectural disaster. The new building clashes with the existing and ruins the outlook from the windows of Stewart House. 3. The deep plan means that the roofs will be very high and dominate the delightful low scale of Stewart House. The new building will therefore have an inappropriate scale. This will be exacerbated by the rising ground floor level in that part of the site. 4. The deep plan does not enable natural light and ventilation to penetrate to the centre of the building (despite roof lights). This does not help sustainability and the BREEAM scores. 5. Consequently the corridors will be dark, straight narrow and unpleasant for both patients and staff. The building is therefore very “institutional”. Views out are vitally important for orientation, wellbeing etc. There is a huge evidence base of research on the benefits of daylight and view for health care. (I can provide this, if needed). For this reason, the best of recent new facilities are planned with circulation routes alongside courtyards, and sometimes using curved corridors, all of which reduces the institutional feel of such buildings. These comments have also been made directly to Blaby District Council in response to our planning application to build the new unit on the Stewart House site. We will continue to work with the local planning officer to resolve any issues or concerns that are raised ahead of the planning application being formally considered. A meeting with the person submitting these detailed comments is also being arranged to discuss them in more depth. However it worth making the following comments: Experienced and expert clinical staff, planners and architects have been involved in developing the plans, and we firmly believe the new unit will meet the needs of patients into the future. The design of the new unit is based on other recent new-build inpatient facilities within the Trust that have benefited from service user and carer input. Additionally, had the engagement process identified anything significant that we had to alter or change in the plans then we would have considered this even if it meant the timetable for the scheme needed to be reviewed. We do not believe the corridors will be dark as we are working with the architects to ensure the space is light through the use of natural lighting and space wherever possible. 6. The T- shape plan is efficient but institutional and uninspiring. It is a fairly standard arrangement and as such could provide some future flexibility for mental health should the Huntingdon’s Disease service not continue. It bears some resemblance to the Watermead Unit at Glenfield and one hope that lessons have been learned from that development, the newest of LPT’s buildings. 7. The T- shape plan does allow a degree of male / female segregation with flexibility in the centre. Hopefully this is intended? 8. The plan and location simply does not take advantage of the potential views out and landscape opportunities that this site offers. The majority of the bedrooms look out onto the boundary wall and hedge which is at a higher level i.e. there is no view and noise from the adjacent site could be disruptive. 9. The proposed small garden/courtyard is important and relates well to the sitting room on the south facing (sunny) side of the building. This is good but only two bedrooms look out onto it. 10. The proposed corridor link to the new building is appalling. Whilst the need to share the main entrance reception with Stewart House is understandable, this link does not work. It does not lead directly off the main entrance and therefore is not obvious from a way-finding point of view. It splits the existing kitchen from the dining room making dining arrangements dysfunctional. It destroys the outlook from the dining/function room which is surely fundamentally important to Stewart House residents. This illustrates that the new building is in the wrong The feedback from consultation with carers is that observation will be key, and we feel this design supports effective observation and will endeavour to make good use of the space in terms of ensuring our patients are cared for safely throughout their stay. We feel that a good use of external planting of shrubs will assist in a pleasant feel for the patient in terms of the views. The feedback we had at one of our engagement events is that this design felt “safe” as there was less opportunity for unwanted visitors to see into bedrooms. Yes the existing car park will have to be relocated and this forms part of the planning application. location. 11. The existing car park will have to be re-provided if this location is chosen. 12. Guidance for this type of building is available in Health Building Note no. 03-01 “Adult mental health units: planning and design” (March 2013). Does the proposed design comply with these recommendations? All relevant NHS Health Building notices have been considered. I personally would like to see the option of siting the new building to the northwest of Stewart House fully explored where it would have a better architectural relationship with the existing and take advantage of the landscape opportunities offered by the site. This location would allow direct access to the existing excellent occupational therapy facilities. An independent entrance would be needed, or a link corridor created but the existing car park would need to be relocated. I would like to see the accommodation planned around a central courtyard with the circulation route opening onto it. This configuration aids orientation for the patients, provides daylight and improves well-being It occurs to me that the engagement process undertaken by LPT was carried out when the details of the proposed new building had already been decided and detailed plans agreed and submitted. This does make the engagement /consultation process somewhat pointless. It would have been more meaningful if the process had been carried out prior to detailed plans having been agreed so that comments could have contributed positively to the proposed solution. Staff experienced and expert in the care and treatment of patients with Huntington’s Disease, planners and architects were involved in developing the plans for this new unit and we believe that, if progressed, they will allow us to meet the needs of this client group when the unit opens and into the future. If the scheme is approved by the Trust Board and we move into the next phase we will be inviting staff, patients and relatives to participate in deciding colour schemes, fabrics, finishing touches and furnishings. The future for the Mill Lodge Building in Kegworth Many villagers will miss the service, but If the full business case Is approved by Trust Board don’t have an issue with the arguments for and the preferred scheme progressed, it will still be moving. Main concern is around the building more than a year before the move from Mill Lodge to – do not want to see it become derelict. the new facilities on the Stewart House site take We would like to maintain our contact with place. We are committed to maintaining an open updates and be engaged in the future fate dialogue with parishioners and community of the building. Many villagers have worked representatives in Kegworth to ensure the best on the site possible outcomes for the Mill Lodge site are achieved. The community wants to be involved in the future of the building and there are concerns about the future potential use of the building, or the risk of it becoming derelict. Personally I don’t want it to become a private nursing home. It occurs to me that individual s can register the building as a community asset and I will be firing on all cylinders to keep it as an asset for the local community. Can you foresee an alternative use for the Mill Lodge building by the NHS? The location and design of the building make it expensive to staff at a safe level. Also the physical environment is likely to require significant investment to endure it complies with current NHS standards into the future. Previous planned changes have stalled We had similar discussions a year or two We must move to ensure the sustainability of the ago and the plans stalled. service and the last thing we wish to happen is to create more uncertainty. We are committed to making the best decision for our patients and to keeping people informed and involved. However, we must also stress that the final decision to relocate services is subject to planning approval and the full business case being approved by the Trust Board.