The government has proposed that every trust will have a patient advocacy service by next year, but already in 1993 Brighton had started a two-year pilot project. The scheme was funded by the Department of Health and the King's Fund and had the keen support of Brighton's board.
I was appointed patient's advocate in January 1994.My background is in nursing and my experience includes industrial nursing and the care of children with disabilities.
I have brought up six children (four are adopted, two have special needs). I have a diploma in counselling skills, have studied transactional analysis, and spent four years with the Children's Society as a post-adoption worker.
When I took up my post I was given a long induction, assisted by the first post-holder, and time to meet with heads of departments and other influential people, as well as to acquaint myself with the five separate sites.
Several weeks before I was due to open my door we had posters and leaflets printed. The posters have a picture of me and a simple invitation to come and talk in confidence.
These posters are in every ward and department, some GP surgeries, carers' centres and churches.At the same time I went into many community groups to talk about the service.
There are at least 40 other people around the country doing similar work to me, each person bringing their own skills into a unique setting.
Patient advocates are based in different departments and responsible to different kinds of line manager.Whatever the differing circumstances, post-holders should be able to be impartial and speak 'loud and clear' for the patients or their carers.
Despite the encouragement from the top, the task was daunting, made more so by the fact that quite a lot of people were unfriendly, or hostile.Many of the staff clearly resented my intervention, however tactful I was.
Getting to understand the structures in the trust was difficult, as was coming to terms with NHS jargon, and at first I felt disempowered. The workload increased quickly, and I had little secretarial support.Worse still, I felt anxious about what I was hearing from patients, and wanted the trust to change.
In the early months I needed a lot of teaching and encouragement, but I was helped by good supervision from my line manager, the director of nursing.
I made a few good friends and I also attended as many social events as possible, which helped counterbalance the isolation of the job where I was not really part of any team. Getting a big slot in staff induction programmes helped me to begin to turn around my relationships with staff. As time went by, patients were giving me very good feedback. I realised that however insecure I felt about my skills, they were appreciating the service.
Influencing the trust Every one-to-one meeting with a member of staff flags up the patient's concerns and begins the process of changing attitudes and practices.My weekly supervision with the director of nursing is essential, as she can use what I tell her to good effect. I have spoken in nearly every department at meetings and gradually dispelled many myths, especially among senior consultants.
I think at first they thought I might be a Mrs Do-good and prissy because of my age - 62 - and that the money for my post could have been used for a senior sister. But all the consultants now welcome me.
I give a report to the trust board once a year in an open session. The press is present and there is no censorship - the trust has never asked me to alter the paper.
One of the main issues to arise from client contacts concerned bereavement and the breaking of bad news.We have developed a training programme in this area and improved quiet rooms.
I have become involved in training, which gives me an opportunity to work with staff towards doing things differently and being more empathetic to the patient.Most staff would now say they experience my role as supportive.
Many people come to me having seen a poster, others because someone has mentioned my name.
I only see people who want to see me - I will not see a patient just because staff say they are difficult. I see people on the wards and departments, in my office and in their homes.
I have secretarial help for three hours a day and I have found that many situations can be handled by a sympathetic, sensible secretary with a good knowledge of the trust.
Enough time has to be given for patients to tell their story. Then I can help them clarify their concerns and together we look at the options for going forward. They decide what feels right for them and if they would like my help.
It is a quick, informal, patient-led service. I try to see people for the long sessions within a couple of days and to see those on the ward on the same day. People also walk into my office, which is very accessible, and I will see them immediately if I can. It is accessible for people with disabilities and has a sofa and toys for children.
The service I provide is not to stop complaints. I am not part of the complaints department and I may be asked to help a patient write a letter of complaint or to give advice about solicitors.
On the other hand, I expect that many people do not complain because they have been able to see the patient's advocate and resolve their concerns. Options chosen by clients may include meeting staff to talk (especially with clinicians).
Often I write the patient's main concerns in a letter to a consultant before the appointment as this helps the meeting along.
Sometimes it is necessary to refer people on for more specialist help. To this end I have collected good information about local support groups and counselling services.
Records, data and confidentiality I use a simple form to record conversations. Every client is offered a copy of this and of any letters that I might write on their behalf.
My notes are for my benefit and do not go into the patient's records or onto the database. The patient database has a number that enables me to access this confidential record easily.
There is also a separate database for categories of concern in line with the NHS complaints categories.When I first see a patient or carer, I explain that there will be nothing registered on the database that could break confidentiality. But if it was necessary for safety reasons, I might have to alert the trust to some information I had been given. And I always warn the client should the need arise.
I now have more than 1,000 new referrals a year.
My work has grown enormously as knowledge of the service has spread and staff have become more confident about my role. I am grateful to have a few volunteers who befriend patients and carry out certain tasks, which frees me.
Given this workload and the responsibilities of the job, it has been essential to have the weekly supervision of my line manager who gives me strong support. I also have outside supervision from a therapist about every three weeks, paid for by the trust. This provides a protective umbrella for both my clients and me.
We have reached a stage now where it is possible to set down some standards for patient advocacy.
Patients and carers need to know about the service, so there must be posters and leaflets in evidence in every patient area in the hospital and out in the community, such as in GP practices.
Talks to community groups also help to raise the profile of the post. It is a patient-led service. Any patient or carer can refer themselves and can be encouraged to do so by staff.Where staff make the first approach, the advocate will only become involved if the patient agrees.
There is an initial response on the same day.
It may be possible to act straightaway, but more usually a meeting is arranged at which the client (patient or carer) has adequate time to express their concerns. The meeting will be arranged at a place most convenient for the client (office, ward and sometimes home).
During this time the advocate listens nonjudgementally and helps to clarify the concerns.
Options for resolving the concerns are explored together, and the client decides how to proceed. They may not be able to do this immediately and may need time to discuss it with the family.
The client may not wish to take the route preferred by the advocate, so the advocate may need to stand back and let the patient feel comfortable with this. Feedback should always be given whenever this has been promised.
The concept of empowerment underpins the practice of patient advocacy in this trust. It helps to redress the loss of power and increased vulnerability felt by patients coming into hospital, an environment where some loss of confidence is inevitable.
The patient makes the first contact and chooses where to meet. They decide the way forward and whether they would like the advocate's support.
The advocate's key role is often to help the patient clarify the issues and decide what they need, and then support them in any way they wish. It is not a 'fix-it' job where the advocate takes over and disempowers the patient.
All information, such as advocate's notes and letters to staff, is available to the patient. If a patient wants to meet a doctor, they may choose to set the agenda with a list of questions that can go to the doctor in advance.
As already mentioned, the advocate is not there to stop complaints and may often guide a patient through the complaints system.
Help in finding a solicitor or other external agent may sometimes be requested. It is good practice for the advocate to work well with external agencies and discover what resources there are in the local community. These contacts are all aids to empowering the client.
Inevitably, the advocate is privy to concerns about practice in the trust. It is the advocate's duty to alert the appropriate senior manager or even the chief executive where there are concerns for the safety of patients, and to be satisfied that action has been taken. It follows, therefore, that the advocate needs easy, informal access to senior managers in order to do this.
I believe that I have been fortunate in that I have had tremendous support from the chief executive.
I have no concerns about seeing him or the medical director if I am worried about a patient or an area.
My line manager acts immediately on any anxieties I have. This easy access to 'people at the top' is vital - the job has to have some kind of clout, otherwise it is just tokenism. If I were based outside the trust, I think it would be difficult to have this easy relationship.
If a complaint about a member of staff is to be dealt with informally (that is, it is not a formal complaint), it may be possible for the advocate to speak to that person confidentially and in a supportive way. But if the complaint is more serious, it will be necessary to discuss the situation with the line manager. Confidentiality, so important to the client, should also be observed for staff where this is possible.
The advocate should never assume that a problem will be resolved because it has been discussed with a member of staff and action promised. Some time after the incident, the advocate should contact the client to see if the problem has been resolved and remains so.
Only then can the notes be filed away. It is important that the advocate designs a system where the patient/problem is kept in view and patients cannot slip through the net.
Where practice needs to be reviewed or change instituted, the advocate can be of assistance, but it is important that the trust takes responsibility for bringing this about.
The advocate may sometimes be in danger from a very angry client. It is important to recognise this and to take precautions. These could include personal alarms and having security staff out of sight but nearby.Visits to people's homes should be reported and security should have details and times of the visit. The advocate should carry a mobile phone.
Both internal and external supervision are essential. External supervision provides support to the advocate, but also provides a check on their well-being and capacity to practice. It should be understood that any concerns of the external supervisor will be shared with the internal supervisor.
Making appointments Given the government's timescale for patient advocacy, many new appointments will have to be made in a short time.
I believe it is essential that trusts take real care in making these appointments, not only for the sake of the trust and patients, but to prevent advocates from finding themselves in a lion's den, without preparation.
The advocate must have free access to all staff and information and not be part of the complaints department. Their line manager should be someone at a senior level. This will underline the fact that the advocate has the public support of the trust board and all its senior staff. The post is a nonstarter if this does not happen.
The advocate is not there to rescue the patient but to act on the client's instructions and to provide a quick and confidential service.
Getting the right person is crucial. Previous training with people, and a varied background of working with people, are essential. An NHS background would be helpful, as would counselling and/or therapy training and experience. Good writing and listening skills are vital.
An advocate may eventually receive positive feedback from patients and staff but must be able to live with the fact this only happens occasionally, however conscientious they may be. It is a lonely job, but brings its own rewards to the right person.
In relation to staff, the advocate needs to:
overcome initial hostility;
tackle everything that comes in, even when this means approaching difficult staff;
never let critical feelings come through when dealing with staff, but encourage a different way of doing things;
have the courage 'to hang in there', to get a result (this takes tenacity and commitment);
be able to leave staff feeling supported every time, even though acting for the patient;
be on the look-out for ways to win over staff;
be able to use their imagination and come up with cunning plans to cut across red tape;
have a sense of humility and willingness to learn;
be able to regard every encounter with staff about a patient as a training opportunity;
go out of their way to be seen at trust functions;
be able to handle the media and speak in public.
The trust needs to acknowledge frequently and publicly that this is a senior post, and this needs to be reflected in the salary.
The advocate should have weekly supervision from their line manager and should have external supervision every few weeks, both for personal support and protection of clients. This should be paid for by the trust.
The advocate should participate in the development of areas within the trust and in designated groups to help bring about change.
(Examples would be bereavement, loss and breaking bad news, complaints handling, and the physical environment. ) There should be adequate administrative support and time allowed for the post-holder to be out and about in the community.
The advocate should report on a regular basis to the trust's board, without censorship, and senior staff need to create an environment in which all staff are willing to hear about the advocate's work.
This can be achieved through induction, training and regular departmental meetings. There should be avenues for communicating concerns about patient care.
This should include immediate access where necessary to the director of nursing, director of medicine, chief executive and chair.
The advocate needs to be able to handle delicate situations with patients, without embarrassing the trust.
A final word is about communication. The advocate must be able to put themselves in the patient's position and use everyday language. It works best when the client feels that it is just two people talking together. I frequently say to myself:
'I could be the client.'
Key points Patient advocates need considerable professional experience and personal skills.
They should report to someone at board level.
The individual appointed should be prepared for initial wariness from other staff and have a non-judgemental approach to staff and clients.
The seniority of the post should be reflected in the salary.
Gaining staff confidence Take every opportunity to meet staff;
support them whenever possible, rather than blame them;
try to leave them feeling good even after difficult sessions;
be prepared to apologise;
use a sense of humour, with care;
never put anyone down;
act with authority even though you be feeling uncertain;
recognise the fear some staff might feel;
say 'thank you'for everything done;
try to leave every department with a positive comment;
try to remember everyone's name.
What it takes up close In one-to-one sessions, the advocate needs to:
accept strong feelings;
have a non-judgemental approach with both clients and staff;
have a sense of humour;
be willing to sit for long sessions;
be willing to discern key points from what may be a long, confused and distressing session;
invest time in following up a case.