Examples

The St. Mary’s Colorectal Cancer Services patient user group

The NHS plan sets out a 10-year framework to modernise the health service. It sets out new ways to increase the influence of the public and patients over the way that the NHS is run. Patient User Groups are one of the ways in which the voice of the patient can be heard and acted upon in a constructive manner. Well handled, such a group can provide a valuable resource for both Hospital Trust, the staff involved and, eventually, the patients themselves. It does, however, call for time, commitment and careful planning so that all the participants know exactly what they are aiming to achieve.

The St. Mary’s Colorectal Cancer Services patient user group has been running since September 2001. It was set up by Nurse Consultant Paula Taylor, prior to the Cancer Peer Review, with the support of Professor Darzi. He offered some funding (£500) but little direction as to how to go about the task. Fortunately, Paula had peer support from a Nurse Consultant in Croydon who had successfully set up a user group in continence care. Paula felt there were two clear reasons for the initiative. Firstly, to hear about the journey of care, from beginning to end, from the patient’s point of view; secondly, to get the views of the patients on new ideas and initiatives before using them in the hospital.

The general idea of the user group was put forward and discussed with a few cancer patients in clinic who had recently been through the colorectal services at St Mary’s to see whether they would be happy to participate.

A proposed mission statement and terms of reference were drafted by the Nurse Consultant to be sent out with the invitation letter so that the aim of the group was clear from the outset. It was felt important that there should be a clear distinction between a User group, and a Support group, therefore it was necessary to select a group of patients rather than simply asking for volunteers.

The first members were chosen from the colorectal nurse’s cancer database mainly on the grounds that they were currently well, and so were fit enough to attend regular meetings, they had mentioned that they would like to help and would be willing to take part in such a project, were interested and reasonably articulate (although this latter was less important than it seemed at first, the quieter members of the group have now relaxed and play an active part in discussions). Twenty-five people were invited, eighteen attended the first meeting and there is a core of fifteen who attend regularly. More by luck than planning, they represent a fair cross-section of the community, and several have particularly useful skills and experience. One member is an excellent speaker, a good committee-man with special knowledge of the primary care system, another has been a GP receptionist, and the wife of another patient, who comes to the meetings, is a psychologist. There is a retired pathologist with medical school experience, and an ex-PA who has offered to help with data input. A member now helps to organise refreshments.

Choosing a venue is not too difficult in St. Mary’s as the Nurse Consultant also has access to the Academic Surgical Unit linked with Imperial College. There are well-equipped meeting rooms available so long as they are booked in advance and it is possible to be fairly flexible about dates and times. Such practicalities as refreshments and reimbursing members of the group for their travel fares were not quite so easy, as the promised money did not materialize, however Paula managed to find just enough to cover the cost of refreshments from the Surgical Directorate and, luckily, all the members of the group were happy to pay their own travel fares. Had any of them been unable to do so, they could have been funded through the social security system, which reimburses outpatients who are on state benefits, but that would have been unwieldy and therefore generally undesirable. In future this difficulty may not arise because Macmillan funding will be available to bid from.

A mission statement,
To encourage a patient focused user group to enhance the colorectal services provided at St. Mary’s NHS Trust. To share problems, solutions and to respect and value user group discussion. Also to listen, respond and set action points to be achieved with review by the user group.

along with an absolutely clear statement of the aims and objectives of the group was sent out with an introductory letter and the first agenda.

The first meeting was not entirely successful. The participants needed more encouragement to introduce themselves and get to know each other, and were reluctant to speak. There were some shortcomings in the practical organisation, such as tables and chairs being left in rows rather than in a circular fashion to encourage discussion, a lack of attendance register and absence of a flip chart, which would have helped to capture comments more easily, – and the late arrival of the Professor who was supposed to be doing the introduction did not help! In this first meeting, the Group agreed their terms of reference and discussed such basic issues as the number and frequency of meetings – which, it was decided, should take place three times a year - and who should Chair them (Paula). They felt that relatives and carers should be encouraged to come along. The group offered to pilot a new cancer patient satisfaction questionnaire to see if this would be suitable for St Mary’s patients.

The main concerns raised at this meeting were the very long waiting times in Out-Patients for blood tests, for follow-up appointments, and to collect prescriptions from pharmacy. Paula can take these concerns and others that are raised to either a Lead Clinician meeting, Colorectal and Stoma nurses’ meeting and/or the Ward Manager meeting. She has met with varying degrees of success but was able to report some progress to the next Group meeting.

As well as St. Mary’s, Paula also runs two clinics at nearby St. Charles’ Hospital (which is not part of SMH, but is linked to the same Trust), where the waiting time for blood tests is much shorter. It is now acceptable for patients who live nearer to SCH to go there for their tests. Patients who live nearer to St. Mary’s may now, if they prefer, come back for their tests at quieter times when the queues are shorter, rather than having blood taken on the same day as their appointment. Another option may be for the OP nurses to be able to take blood too, but this needs negotiation with St. Mary’s Outpatients Manager and training. This would reduce the waiting times for bloods and give OP nurses an additional skill that they may want to learn. This would benefit everybody, as the clinics would have fewer delays and therefore finish earlier.

Booking follow-up appointments can be slow because the booking clerks are very busy – so now it has been arranged that follow-up appointments can be made, through the colorectal nurses, direct with the administrator whilst the patient is being seen in clinic. Out-Patients Pharmacy closes for lunch, which does not help waiting times – so, for the moment, patients will be able to go across to the In-Patients Pharmacy during that time to collect their prescriptions. In the future Out Patients Pharmacy are starting a trial for continuous opening hours, which should help to cope with delays.

The second meeting, which was much more successful, covered the response to the Group’s concerns, feedback from the Cancer Peer Review, feedback from a colorectal cancer awareness campaign, and results from the Patient Satisfaction questionnaire. The Minutes, Report and Agenda taken to that meeting illustrate the manner and detail in which the topics are covered. The Group were asked for their comments on a list of questions about colonoscopy for a research project for junior doctors, who have to explain the procedure to patients. They were also given a draft of the new Patient Self-Assessment form for comment. Views from the users were also sought on a new clinic letter with details of suppository self-administration and a discharge check-list. A comment from a patient about lack of privacy in clinic made us look at how the system of notes coming into the consultation room could be changed, which subsequently has been done to lessen interruption. A volunteer from the group was called for to take part in the St. Mary’s CRC study day, which they did with great success. Plans were made for subsequent meetings.

The meetings are now firmly structured. Each meeting is designed to focus on one specific aspect of the patient’s journey of care, starting with symptom presentation and going on to the first visit to the GP, which was covered in the third meeting. The fourth meeting focused on the first outpatients’ appointment and later meetings are planned to cover investigations, ward care, adjuvant therapies, follow-up clinic appointments, etc. CRN’s prepare prompt questions before the meetings so as to make sure of covering the planned topic.

The Group has coalesced and they speak freely. Their views are sought on all patient questionnaires and information leaflets. Paula takes them to the relevant clinicians’ and managers’ meetings, where they are discussed and problems thrashed out. A detailed report of the resultant action is taken back to the group. Nothing is ignored. Members of the group have been involved in CRC workshops, the Colorectal Study Day at St. Mary’s Hospital, where one member, who had also taken part in a seminar in Westminster, gave a very useful talk. They give a much-needed patient perspective on the subject, which the health professionals value.

A member of the User group describes his experience:

After a somewhat quiet start, everyone had a chance to talk about their operation and how easy it was to talk about one’s self, we soon got to know what affect our experience had upon us.

I think it was the third meeting when the group started to put forward suggestions to improve the care of patients after the operation, and once started they haven’t stopped, indeed at the last meeting they were putting forward suggestions for the Doctors to consider.

The group is going from strength to strength, they are showing no sign of running out of ideas or enthusiasm, they were asking for more meetings.

The response we get back from our Nurse Consultant Paula Taylor is very positive and we have been assured that many of the suggestions have already been put into operation in the wards.

This has been a resounding success, the Patients get an opportunity to give something back, a sort of thank you, the Hospital gets a feed-back on how they are doing, and suggestions that are considered good are taken on board, with having such direct contact only good can come out of this experience. Long may it last.

The User Group makes a useful contribution to the colorectal services, and, to show their appreciation, the Nurse Consultant tries to make the meetings interesting. They offer a short talk at meetings (which could be seen as Patient Education, and paid for out of that budget) and, at a Christmas meeting, were able to lay on a lunch party. The Group support each other, but this has been a by-product rather than the point of the venture. Individually they offer skills that can be, and are, called upon by the hospital, but that, too has so far been a matter of chance – or part of the give and take of patient participation that contributes to an atmosphere of mutual understanding and respect.

The Group still has a long way to go – they are only half way through the ‘journey of care’ topics. The aim is to keep the present participants until they are finally discharged as cured, which will be in some three years’ time. They have recently indicated that they would like to meet four times a year, instead of the present three. It is still not quite certain how they are to operate in future, whether to keep the original members together as a distinct group, or whether to add to it with new members as they go along.

Treatment is evolving so rapidly and radically that the experience of newcomers is often very different from that of the original group. For instance, the Patient Information leaflets for stoma reversal are now out of date, because a different method is used – a subject upon which the present group cannot possibly comment. The hospital does need constant feedback on whatever is the current treatment or service provision. There is a good case, in future, for being selective and making an effort to co-opt people with special skills to offer, and Paula is considering forming a core group of ‘expert’ patients whose opinions can be sought and help called upon and can potentially be there for support for new patients and relatives diagnosed with colorectal cancer.

The St. Mary’s User Group is a valuable resource, but it does take considerable time and commitment from high-level staff. Two weeks before each meeting Paula will spend perhaps two half days preparing minutes and agendas and on such practicalities as arranging the venue, refreshments and speakers. The meetings themselves last two hours and have to be carefully planned so that they remain focused, then there are people to talk to for discussion around the issues raised that they may be able to help with, and follow-up action to be arranged, which is predominantly done by the Nurse Consultant. Although with practice the task is becoming easier and Paula is able to call upon useful support from the team, she estimates that it takes about ten percent of her time. Collaboration is needed from the whole department if the Group suggestions are to be taken seriously, and the SMH venture is very much joint effort. There is, in return, much to be gained from the Group and it is a useful tool (indeed weapon) to help bring about improvements.

All minutes are mailed to the colorectal nursing team, Lead Cancer Nurse, The Professor of Surgery and The Lead Clinician. A section documenting the User group progression is detailed within the colorectal nursing team’s annual report which is sent to the Director of Nursing, and Chief Executive of the Trust. As the group’s concerns tend to be fairly close to those of the department as a whole, their opinions and suggestions can be used to add weight to an argument, for instance, blood tests and waiting times need to get even shorter; patients coming in for bowel surgery need to come in much earlier in the day now that Ward Managers understand how long their preparation takes, and follow-up appointments are getting easier to make.

Paula works on a system of trial and review; if a new way of doing things works better than the old, then keeping it. The Group have made some very useful contributions in the area of patient information. For the future the group will continue to work through the pathway of care, comment on a new chemotherapy video, discuss an alternative method of follow up care called diary-led follow up, represent users by working with the Cancer Services Collaborative and look at a pathway for patients undergoing bowel resection.

User Groups are labour intensive – they require time, commitment and considerable skill, as well as some modest funding. They are not all that easy to keep clear and focused and need careful direction– but then this applies all the way up the clinical and administrative hierarchy, who have to be persuaded to listen if anyone is going to benefit from the effort. Paula is a powerful and eloquent advocate. The St. Mary’s Colorectal User Group has been a successful exercise. It is still developing.

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