Published on 26 November 2015
Thank you for the opportunity to put forward my views as to how we might develop advocacy services to improve patient safety and standards in our health service. As Ombudsman, I can deal with complaints about the public health service, although at the moment, I cannot deal with those elements of complaints dealing with clinical judgement.
I was concerned from the outset that the volume of complaints on health matters coming to my Office was significantly below what I would have expected and very substantially lower as a percentage of complaints than those received by the Ombudsmen in the UK. As complaints provide a vital source of learning for the health service, and give patients and their families and avenue to have their concerns addressed, I was anxious to understand why this should be the case.
I therefore commissioned the first own-initiative investigation to be undertaken by my Office.
During the course of my investigation "Learning to Get Better" which I published at the end of May, I examined how public hospitals handle complaints. I used a wide variety of approaches including surveys, visits to hospitals during which my staff observed whether it was easy to find out how to make a complaint, met with key staff and examined complaint files. We looked at previous cases considered by my office and held meetings with key organisations. I invited members of the public to put forward their experiences of complaining and held focus groups to explore the issues which arose.
Not surprisingly, many individuals described the difficulty they experienced in determining how to complain, and who to complain to. There was evidence of a failure to signpost, not least to my Office, and people described their frustration with delay, inadequate communication and the failure to provide comprehensive answers to their concerns. They often felt that the apologies they received were inadequate or insincere. They said that it takes great stamina and determination to pursue a complaint to a conclusion.
For many people, the hope that they could improve the service for others was a prime motivation. People typically say that they don’t want what happened to them to happen to anyone else.
I should say also that I found many examples of good practice and included these in the report. Board meetings which opened with a patient describing his or her experience, and training on how to recognise and deal with complaints being included in induction programmes for frontline staff, were but two examples.
As part of the investigation, I invited a number of patient advocacy groups to complete a short survey on their experiences of the HSE and hospital complaints process. The majority of advocacy groups were of the opinion that the HSE and voluntary hospitals did not provide sufficient advice and information on all relevant aspects of the complaints process. One organisation said that there is a different process within each hospital with no recognised individuals dealing with complaints and no job title that is easily recognised by patients and their families.
One of the main patient advocacy organisations said that the most frustrating thing about complaints to hospitals is that it is difficult for patients or relatives to navigate the complaints systems. It was also particularly frustrating for many patients that matters relating to clinical judgement could not be examined under the statutory complaints process. In order for the complaint process to work better for the patient, this advocacy organisation was of the view that one organisation should have overall responsibility for complaints and that all issues - clinical, nursing and administrative - should be examined by that organisation.
I made a number of key recommendations, all of which were accepted by the HSE.
In relation to advocacy services, I recommended that:-
"Independent advocacy services should be sufficiently supported and signposted within each hospital so patients and their families know where to get support if they want to raise a concern or issue".
"Each hospital should actively develop and encourage volunteer advocates with the hospital who can help support patients who wish to express a concern or make a complaint".
The main finding of the investigation was that many people are reluctant to complain because they believe that their treatment or that of their family member will be worse as a consequence.
From an Ombudsman’s perspective, advocates can play a number of key roles in helping to tackle the issues which have been identified. In the first instance, they can help to tackle the poor communication which often leads to complaints, by ensuring that patients get proper explanations and that they fully understand what is being said. This is particularly important where issues of consent arise.
Secondly, they can reassure patients and their families or carers that no detriment will flow from any complaint. They can help people to formulate complaints and to navigate the system. They can press for answers and help to reduce delays.
As Welsh Ombudsman, I worked extensively with the Community Health Councils which provided state funded advocacy services within each of their areas. The Community Health Councils in Wales are designed to represent patients and provide free independent advice and advocacy to individuals who need support. They are independent of the health service. A national body co-ordinates the work of the advocacy service, provides training and support for advocates and facilitates meetings to share experience and knowledge. It works very well.
Advocacy is about supporting people to say what they want, to represent their interests, secure their rights and obtain services they need. It promotes social inclusion, equality and social justice. Having an independent advocate who is trained to a high standard and who is supported in their work means that patients who are vulnerable have a voice. It also means that complaints which they make in the interest of patients are framed in a clear and concise way. My experience in Wales is that input from these independent advocates has led to better decisions about treatment and services for patients.
I am heartened by the recent announcement by the Minister for Health to establish a National Patient Advocacy Service which, although funded by the state, will be independent of the HSE and the Department of Health. As I understand it, this service’s role will be to ensure that patients’ reported experiences are recorded, listened to and learned from. It is the intention that such learning will to be shared between hospitals within hospital groups; between hospital groups; nationally throughout the wider health system; and published. The plan is that this service will also provide direct support and information for patients as well as guiding patients to the agency most appropriate to their needs. I think that there is a great need for such a service and it is my hope that it will be extended to all health service users and not solely patients availing of in-patient care.
Consider, for a moment, the position of a vulnerable elderly patient being admitted to hospital for treatment. Elderly patients may well spend several hours on a trolley in the Emergency Department before being admitted for medical care. They may be hard of hearing, confused, frightened, and uncertain as to what is ahead of them. They may not understand what the nurse or doctor is saying to them especially if English is not the first language of the nurse or doctor. They may want to voice concerns or make a formal complaint but lack the confidence or ability to do so. It is easy to see in such circumstances how an advocate can perform a very valuable function from the perspective of both patients and hospital staff. They can help to solve small problems before they become large ones.
At the recent National Patient Safety Conference we heard from a patient’s perspective how difficult it was for an unaccompanied elderly woman in the Emergency Department to receive assistance when she needed to use the bathroom. This elderly woman, who was on a trolley, put her hand up several times to attract attention but was ignored. Five hours later, a member of staff brought her to the bathroom – the woman had nothing to eat or drink during that time. The point was made at the Conference that patients enter a different world when they go to hospital – a world very familiar to hospital staff but very alien to some patients who may be alone and frightened. There is a great need for an advocacy service for such patients be it in the Emergency Department or in-patient/out-patient setting. Advocates can help hospital staff to see things from the patient’s perspective.
I would like to tell you about a complaint which I received last year from a middle-aged woman who had a phobia about her eyes being touched. Unfortunately, the woman had developed a cyst under her eyelid and had to have it removed. She was assured that she would receive some medication to calm her while the procedure was being carried out. However, once the procedure was completed the woman had to return to the hospital some days later to have her sutures removed. This was when she encountered difficulties as she was told no calming medication would be administered to her for the purposes of removing the sutures. Much to her dismay, she had to suffer the anxiety of having them removed without any medication.
The purpose of her complaint to my Office was two-fold. Firstly, to highlight her experience and ensure nobody else suffered in the same way and secondly, to see if an advocate could be appointed to assist her in the event that she needed to return to the hospital for further eye treatment.
You will be pleased to learn that we were successful in sourcing an advocate with the help of the HSE and SAGE. The woman was assured that she would be supported and accompanied to hospital in the future should the need arise. This meant a great deal to this woman who was reluctant to return to the hospital again.
It is important to understand that I was hampered from exploring whether the woman in this case should have received calming medication while her sutures were being removed due to the clinical judgement exclusion in the legislation governing my Office. It has become all the more important that this obstacle be removed given that my remit has since been extended to cover over 22,000 nursing home residents in more than 430 private and voluntary nursing homes since 24 August 2015. These homes provided 80% of long term care nationwide. I was greatly encouraged by the Minister's recent announcement that he intended to explore the extension of my remit to include clinical judgement and also his intention to simplify the complaints process. I have always endorsed the notion of investigating once locally and investigating well, after which complainants can come to my Office if they remain unhappy. The changes which the Minister has announced will make this a reality.
I should mention that, building on the lessons learned from the "Learning to Get Better" investigation, my Office has rolled out a model complaints system for private and voluntary nursing homes. The model includes a provision that in cases where a complainant may not have the capacity to lodge and pursue a complaint in their own right the nursing home will seek to identify a third party advocate to assist the complainant through the local complaints system.
In conclusion, I would encourage the development of independent advocates within our health system who are appropriately trained and who are properly supported in their work. The involvement of volunteer advocates will be very important if we are to ensure that the service can meet the demands placed upon it. I would hope that such an advocacy service can cover all health service users, be they in-patient or out-patient, nursing home resident or person with a disability in receipt of our health service who may benefit from support, help or advice.
I would welcome any questions or comments from Committee members and I thank you for the opportunity to discuss this important topic with you today.