Issue 100, March 2008
A review of the service model and the added value of the service for residents and their family/whanau.
Amaryllis House, the first residential service specifically for people with Huntington's in New Zealand, was opened in Lower Hutt in September 2004 by NZCare Ltd on contract to the Ministry of Health. Towards the end of 2007, the Advisory Group commissioned an independent review of the service by social researcher Alison Gray. The objective was to look at how well the service meets the needs of residents and their family/whanau and to provide vital information for further service development initiatives.
Alison Gray completed her research and reported to the Advisory Group in February 2008.
The service is based on two fundamental principles that apply overall. These are that all people, irrespective of their health or disability needs, have the right to live as normal a life as possible; and, all people have opportunities to maximise their independence and have control over their own life and decision-making. In setting up Amaryllis House, NZCare Ltd applied a further four principles, namely - that a range of support services need to be provided to ensure choice and decision-making opportunities; residential care support must be designed to ensure the principles of normal living are supported; personal security is paramount; and, maximum autonomy and self determination should be maintained.
Amaryllis House fully supports the principle of "normal living" and it functions as a home. The management team fully understand and support the principles that underpin the service and make every effort to ensure that these are maintained. They ensure that meeting the needs and wishes of residents is the first priority. They also ensure that any issues that residents or family members raise are addressed quickly. Family members were generally happy with the range of services provided by Amaryllis House.
The level of clinical expertise appears to be appropriate. One of the major advantages of having a dedicated facility such as Amaryllis House is the build-up of expertise among the staff and the support services they engage such as dieticians, occupational therapists and speech language therapists, and the local hospice service - they all become very skilled in working with people with Huntington's. In addition, staff are happy working at Amaryllis House and turnover has been extremely low.
Staff and family members agree that strong leadership is the key to the success of the unit. The management approach at Amaryllis House has been adaptive. The original plan to have 12 permanent beds and two respite beds has changed in response to the demand for places. The Ministry of Health agreed to make one of the respite care beds permanent and the second bed is also under pressure. Another change is related to the use of the building. This change was driven by residents' preferences but it does have implications for the design of facilities in the future.
Amaryllis House recognises personal security needs and gives priority to safety. One of the changes to the operation of Amaryllis House has been the increase in security. Residents feel safe in Amaryllis House and staff, families and medical specialists agreed that the nature and level of security offered inside and outside the house is appropriate and as unobtrusive as possible.
The management team is supported by an Advisory Group which is made up of representatives of the residents' families, the Wellington HD Association and NZCare Ltd. The Group is able to provide independent input to assist the managers in maintaining quality care and to afford appropriate change if and when they think it is necessary.
The residents and all family members interviewed were extremely positive about Amaryllis House. They liked the quality of care, the security and safety it offered, the friendliness of the staff and, in particular, the responsiveness of management. The fact that family members had so few complaints was an indication of the high quality of the service offered at Amaryllis House.
The research interviewed a few people whose family member with Huntington's Disease lived in other residential facilities. Although they did not know much about the services at Amaryllis House, they were certain that the facilities they were using were no match for a purpose built, specialist service.
Families with residents in Amaryllis House who had experienced other services could clearly see the benefits of having a dedicated service and the advantages they mentioned included familiarity with the disease, an associated increase in staff skills and understanding, personalised treatment and care, and good communication. They said that staff in other units were often unfamiliar with Huntington's Disease and the physical environment was not always appropriate.
The report concluded that Amaryllis House achieves its goals very well. It provides a secure, safe, homely environment for residents and a sense of security and a welcoming environment for family members. It functions as far as possible as a home, but still retains some elements of an institution and this is influenced by the health and condition of residents such as limited mobility, communication, decision-making, and safety issues. Staff balance the desire to give residents as much control as possible with the need to protect their safety and ensure that they are appropriately cared for. Family members fully recognise these constraints.
The Advisory Group is delighted with the report and the positive findings on Amaryllis House. As Alison Gray noted in the report
"The residents and all family members interviewed were extremely positive about Amaryllis House. They liked the quality of care, the security and safety it offered, the friendliness of the staff and, in particular, the responsiveness of management. They found the "open door" policy welcoming and were grateful for an opportunity to regain some normality in their own lives".
The findings demonstrate that a dedicated facility such as Amaryllis House provides the best care for those with Huntington's Disease.
The full report will be made available on this website towards the end of March.
We welcome comments in support of the findings of this report or contrary views. We plan to publish a discussion article on the subject of dedicated units as seen by readers. Please send your comments to the Editor. P.O. Box 30328, Lower Hutt 5040, New Zealand or firstname.lastname@example.org by 10 May 2008.