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New patients' advocacy group 'to be voice in the community'

John Pacheco and wife Fernanda Pacheco outside the King Edward VII Memorial Hospital. Mr Pacheco has joined the new patients' group.

A husband angry at the treatment his sick wife received at King Edward VII Memorial Hospital has formed a group for other dissatisfied patients and relatives.Allan DeSilva, 77, says more than 25 people have agreed to join his committee, which is calling on the Island's only acute care hospital to “comply with a patient's right to quality care”.The new group will hold a public meeting for anyone interested in getting involved on Thursday at 7.30pm at Paget Gospel Chapel, on Middle Road.Bermuda Hospitals Board (BHB), which is responsible for KEMH, said yesterday it would readily welcome a “positive dialogue” with those interested in improving care.But it criticised the new group for “airing personal complaints through the media”, adding: “This feels more like an attempt to malign and attack, rather than progress and improve.”Father-of-one Mr DeSilva, of Paget, told The Royal Gazette his idea was to give patients a “voice in the community” and lobby for better care, especially for seniors, at KEMH.He is launching the group with the help of former Bermuda Health Council member Mark Selley, chairman of Bermuda Stroke and Family Support Association.“I don't want to belittle or demean the hospital itself,” said Mr DeSilva. “My intention is to let people know and be aware that there is a problem for seniors.“The care that the elderly people are receiving is not the care that they should be. Everybody that has come to me, 80 percent have been senior citizens.”He added: “What we are trying to get is people to come together, instead of talking about it on the street corner. Come to this group and give your feedback.“How can the Government or the hospital solve these problems? Anyone is welcome [to the meeting] but this seems to be more attached to elderly people, who are not getting the care they deserve.”Mr DeSilva's own complaint (see separate story) stems from a stay his wife Silvia, 71, had at KEMH last year.Mrs DeSilva has diabetes and was admitted for pain management in August.Her husband claims she went into insulin shock and developed pressure sores and delusions in hospital due to inadequate care.He complained but insists he hasn't had a satisfactory response from anyone in charge.Other members of the group have a variety of grievances, from alleged botched operations to missed diagnoses, but not all have gone through the official channels to complain, including four who spoke to this newspaper (see separate stories).The hospital treats tens of thousands of people a year and recently released figures from BHB's patient satisfaction surveys suggest most are satisfied with their care.A BHB spokeswoman said yesterday: “Bermuda Hospitals Board will readily welcome a positive dialogue with any individual or group who share the same key priority we have: to improve care every day. This requires listening, dialogue and partnership.“Unfortunately, the only information we have received to date about this group of patients has been a request from The Royal Gazette to respond to the personal complaints of a small group of individuals.“We welcome a patient advocate group to help us improve care by raising issues and offering views on what could be done to address them.“By initiating the establishment of this group via airing personal complaints through the media, however, this feels more like an attempt to malign and attack, rather than progress and improve. We believe Bermuda deserves better from a patient advocate group.”The spokeswoman added that the board's 1,800 staff worked “incredibly hard” to provide an internationally recognised standard of care.“The evidence indicates we are improving every day,” she said. “For example, we have halved the mortality of stroke victims ... over the last seven years from 28 percent, which is similar to the UK, to 13 percent, which is in line with Canada, a leader in effective stroke care.“We have increased the number of stroke victims discharged from hospital to home, rather than to a rehab centre or care facility, from 49 percent to 68 percent.”She said accreditation reports for clinical quality and patient satisfaction surveys carried out by an independent company had been public.“Over 10,000 patients have been surveyed since 2009 as part of our ongoing focus on improving the patient experience and satisfaction, according to these 10,000 surveys, satisfaction is rising.“We also know that some individuals are not satisfied and our survey has created an invaluable source of information from which we have steadily introduced a programme of improvements, from new food delivery systems [and] ward upgrades to increased rounding by nurses and service excellence training to improve how we treat patients, staff and their families.”Jennifer Attride-Stirling, chief executive officer of Bermuda Health Council, said there was currently no group representing broad patient interests on the Island.“Within the health system, it is the only stakeholder group without an association to represent it,” she said. “A group that could advocate for quality patient care in a fair and dispassionate manner would be a positive addition to the health system.”A Ministry of Health spokeswoman said: “BHB has indicated to the Ministry of Health that it is aware of the formation of this group. BHB will keep the Ministry updated as to the progress and communication going forward.”* Have you been affected like this? Email sstrangeways[AT]royalgazette.bm* Mr DeSilva can be contacted by e-mailing sadesilva[AT]logic.bm.

How to complain

Hospital patients who are dissatisfied with their treatment or care have the right to voice their concerns.They can talk to their doctor, nurse manager or a clinical director or contact the Patient Advocate Manager, who has been in place since January 2011.Four of the patients who spoke to The Royal Gazette for this article had not made formal complaints, with some unaware they could do so.A Bermuda Hospitals Board spokeswoman said that made it hard to give detailed responses on their cases. She also noted that some of their grievances involved private physicians.The spokeswoman pointed out that patients could request their own medical records to review and that if they made a written complaint a formal investigation would be launched.She added: “Complaints generally can highlight improvements but even feedback, such as the fact they didn't know there were official channels to complain, is very valuable to us so that we seek more ways to raise awareness.“People might not realise they not only have a right to complain but a right to be involved in their own medical care all the way through the care process.“This is proven to improve outcomes and patient safety. Everyone coming into hospital nowadays should receive a patient handbook that includes information about the patient advocate and speaking up and the same information is on the [BHB] website.“We also have a patient safety officer who goes round the wards with leaflets, as well as the Patient Advocate Manager.”Jennifer Attride-Stirling, chief executive officer of Bermuda Health Council, which oversees the Island's healthcare system, encouraged patients to use the hospital's complaint handling process “if they feel they have just cause”.She said: “Nothing can guarantee that every patient will get the outcome they seek; cases can be more complex than they appear on the surface. But it's good practice for healthcare providers to have an avenue for addressing patients' concerns.”She added that the council also had a complaints handling process. “We deal with many complaints and complex queries through the year. We act as mediators, as we don't have power to adjudicate on any case or to review clinical care quality.“But we assist complainants by following up with the right entity to ensure they address patients' concerns and we work with various parties to try to achieve mutually agreeable solutions.”* BHB's Patient Advocate Manager can be reached on 239-1425 or by e-mailing patientadvocate[AT]bhb.bm. Visit www.bhb.bm to view the patients' handbook and full patients' bill of rights.* Bermuda Health Council's number is 292-6420 or e-mail healthcouncil[AT]bhec.bm. The website is www.bhec.bm.