Letter to the Editor of The Royal Gazette
Response to coverage of the Continuing Care Unit
Bermuda Hospitals Board has been very disappointed in the sensationalized stories being printed regarding the care of Mr Luke Caines by The Royal Gazette, and the way that its comments have been edited and misinterpreted in repeated articles. We therefore request our full statement is printed by the paper and have included it in this Letter to the Editor.
However, I want to start by addressing claims that BHB was ‘criticizing’ Summerhaven in today’s article. BHB has been working with Summerhaven in order to facilitate the transfer of Mr Caines, and were extremely concerned to see The Royal Gazette claim that BHB’s statements about why Summerhaven previously was not a viable option for Mr Caines as “criticizing” the service. The Royal Gazette report has failed to understand that different facilities have different levels of services depending on the type of clients it has been established for. This is not a criticism, but a basic fact. Summerhaven has evolved its service in more recent times to accommodate people who are less independent. This is simply a change that allows some residents with more care needs the ability to move there. The service level prior to this evolution was absolutely fine for the people who lived there, but it just wasn’t a viable option for those individuals who needed more support.
We would now provide the rest of our statement in full:
CCU Residents are Not Kept for Financial Reasons
BHB absolutely refutes allegations in The Royal Gazette that BHB has tried to keep Continuing Care Unit residents who would be better placed elsewhere for financial reasons. This would be highly unethical. If someone would be better placed elsewhere, every effort is made to re-home them, and annual or twice a year family meetings are arranged for each resident to discuss their care and look at options. Over the years, BHB has been able to discharge several patients home or into community facilities. The fact is that CCU has been the place of last resort for many people who cannot find placements in the community, or whose families cannot or do not want to care for them at home. The assertion that Mr Caines has been kept on CCU when he could have been placed elsewhere is untrue, and the claim that this was to keep a CCU fee has no merit. Before the Geriatric Subsidy was stopped and CCU closed to new admissions, there was a waiting list for CCU services. This means if Mr Caines had moved elsewhere during this time, there were plenty of people who would have filled his space.
Fees for Individual Residents
The claim that Mr Caines shouldn’t be charged the same fee as other residents is not based on any proper assessment. Whilst institutionalized care is not necessarily optimal for the young disabled, it important to note that Mr Caines has a full accommodation and meal service, which includes 24 hour nursing and nursing aide support, access to a multidisciplinary medical and allied health team when needed, along with a vibrant activities schedule which includes on-site activities and trips. He also benefits from dental and foot care.
Placement of CCU Residents
CCU has been the only option for many residents as it offers a higher level of skilled nursing than any other facility. However it is not always a service decision. It can also sometimes be because Bermuda does not have a more appropriate service, or because families cannot take on or do not want the responsibility of caring for someone at home. Up until recent times, Summerhaven did not provide the level of nursing and care services required for certain residents of CCU and, if families did not take responsibility for the family member, there were no other options. Summerhaven has provided more support over the last couple of years, so when a bed became available last year, and Mr Caines voiced his desire to move, BHB was entirely supportive. Summerhaven came in and did an assessment and agreed Mr Caines could move. The only current hold up has been related to the Financial Assistance process. BHB has been advised by Financial Assistance that a family member must be present with Mr Caines, and this has not yet happened.
Descriptions of Mr Caines’ Experience
Mr Caines has been on the Continuing Care Unit for about 40 years. However, on behalf of the staff who have cared for him each day, BHB takes great objection to the description of the service he has received. It is not clear if the reporter was misinformed, or made an incorrect assumption. Mr Caines is not and has never lived on the ward for dementia patients. There is a specific unit for people who have Alzheimer and dementia related disorders. The ward Mr Caines lives on is not locked down and Mr Caines regularly goes out to the CCU elevator where he greets visitors and staff. The reporter erroneously referenced a Dementia UK report. This report was not about the unit where Mr Caines lives. It is on a different floor, and this unit has a different kind of service due to the nature of the residents. The report authors did not visit Mr Caines or his unit and made no comments about them.
For the record, Mr Caines lives in a long term residency unit in CCU. One of the residents has been on CCU longer than Mr Caines. It is not an end-of-life service. Although many residents are seniors, they can live many years and every effort is made to provide a decent quality of life through activities and medical support. Some residents may move to alternative accommodation after a stay in CCU, some do remain at CCU until they pass. People do not die after 18 months, as reported in The Royal Gazette. The ward is not locked during the day and there are regular activities and trips organized that Mr Caines participates in. Only if he says he does not want to participate would he not be included. Trips included going to Cup Match, Good Friday kite flying, visits to Bermuda museums and attractions, etc. Most residents are seniors, but there are some younger disabled residents.
Care provided for Mr Caines
Mr Caines is in good health and has no wounds or bed sores, given his long term immobility. Medical health is only one indicator, as mental wellbeing and quality of life is also very important on CCU. Activities have been mentioned previously, but it should be specifically noted that staff put a lot of effort into spending time and supporting Mr Caines with supplies above and beyond the expected services provided to residents. They take him out to lunch, buy him special toiletries, electric toothbrushes, were major contributors to his new wheelchair, and even pay for him to have cable TV.
Is CCU an appropriate home for disabled residents?
There is a larger question, which The Royal Gazette does not address or even ask, which is about the services Bermuda needs for people with disabilities and whether CCU is an appropriate home. For decades it has been the only option. For certain residents, including Mr Caines, BHB believes a home setting is much more appropriate, but he did not have a family option and Summerhaven only became a viable option more recently.
Mrs Venetta Symonds
Bermuda Hospitals Board, CEO