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The first seminar was very well received by all those who attended. At its meeting on the day before the Nephrology in Practice 2001 conference in Manchester, the Steering Panel heard that all delegates who completed their feedback forms gave the presentations 100 percent for their length and the time available afterwards for questions.

Risk Groups: horses for courses, the presentation by Dr Roger Greenwood which discussed the importance of planned care for pre-dialysis patients, was voted the most useful presentation because it was relevant, clear and informative, the delegates said.

None of the presentations could be accurately described as "least useful", they added.

The Forum appears to have been of practical as well as academic value.

Delegates said that they would be putting three key points into practice in their units:

		gathering more patient information;
		setting up information evenings for patients and carers; and
		using the criteria for early start to pre-dialysis.

All respondents would like to attend a multidisciplinary seminar in the future because they see communication among the various members of the heathcare team as vital to good pre-dialysis care.

Pre-dialysis is multidisciplinary

This wish for the Forum to be more multidisciplinary occupied much of the Steering Group's time at the meeting. All agreed that pre-dialysis care needed a multidisciplinary approach. But members questioned whether or not the time was ripe to expand the next seminar's target delegates to embrace other appropriate health professionals.

Several steering-panel members reported that many non-nursing colleagues had expressed interest in the Forum, its aims and its seminars.

So, while the Steering Panel concluded that it wanted to open the forum up to other discipline eventually, it was too early to do so at the moment.

November's seminar will, therefore, be directed at nurses but the Steering Panel would be looking at inviting speakers from other disciplines as a stepping stone on the road towards opening up the Forum and its activities to all interested health professionals.

The next seminar is also likely to be more interactive. Ways to involve delegates more could involve a debate format in the afternoon, with electronic voting. Alternatively, the seminar may make use of the expert-panel format, with delegates being able to ask questions from the floor.

Many topics at the November seminar will be drawn from those suggested by delegates at the first seminar, the Steering Panel decided.

But there is going to be much more to the Pre-Dialysis Forum than six-monthly seminars.

National Database Directory agreed

A key activity will be to set up and, most importantly, maintain a National Database Directory of all health professionals interested in pre-dialysis care. Regular updating of the Directory is vital to give the proper professional image, the Steering Panel agreed.

The Directory is already well underway following the April seminar. Again, the Directory is going to concentrate on nurses but it is hoped that it will quickly expand to include every health professional interested and active in pre-dialysis care.

It will be published both as hardcopy and on the Web, within a specially constructed Pre-Dialysis section within the public area of the nephronline.org Website. The hardcopy version is needed because many people do not have access to the Web, the Steering Panel recognised. Initially, it will be laid out alphabetically by location, but the beauty of a database-based list is that it could eventually be accessed by healthcare specialty as well.

There was a lively discussion about setting up a resource detailing currently available leaflets for health professionals and patients. Initially, this will be aimed at fellow health professionals, but eventually might grow to embrace materials for patients and carers.

This resource will predominately offer guidance rather than prepared examples because, the Steering Panel believes, examples drawn from locally prepared materials would be too specific and often geared to local populations of patients.

The availability of the resource would have to be publicised, too, the Steering Panel agreed. Often, useful leaflets received publicity when they were first produced but this meant that people taking up jobs or roles after leaflets had been launched might be unaware of their existence.

Health professionals would also be encouraged to contact their peers when setting up a new initiative in their locality to see if it had been done before. This would benefit all as it would help stop people having to reinvent the wheel. One example here was how to get in touch with local translators to translate leaflets for local ethnic populations.

Newsletter Pre-Dialysis Points approved

The Steering Panel also approved the circulation of the first issue of the Forum's newsletter Pre-Dialysis Points, and suggested that it should be mailed to renal units in general as well as to its target circulation of nurses known to be interested in pre-dialysis care.

The Steering Panel meeting ended with an account, by Amgen product manager for nephrology Dave Allmond, of how his company was contributing to better care for kidney patients overall. Clearly, Amgen's sponsorship of the Pre-Dialysis Forum was one initiative, but there were several more, he said.

Nephronline, itself, is supported by Amgen and has been receiving increasing interest throughout its relatively short life. Already the Website has recorded one million hits and can boast a registered "readership" of 87% of its target audience.

Amgen is also heavily committed to making funds available for research projects and Dave Allmond explained how the company was now channeling this money.

He told the Steering Panel: "We find it quite difficult as a pharmaceutical company to hold a relatively healthy pot of money from an outside perspective, and then get ad hoc enquiries from nurses, pharmacists and doctors for grants for small research projects.

"We risk been seen to be either biased towards a particular research centre or running the risk of upsetting the balance at another.

"What was agreed with the Amgen Foundation was that we would put a repeated healthy sum of money into the BRS, NKRF and INS -- the Irish Nephrological Society -- and those three bodies would decide where that money would go."

Patients need holistic approach

Many doctors and nurses rightly believe that kidney patients need a holistic approach to their care, he continued. To support this view, Amgen had launched its Life in Full programme.

The programme consists of a variety of educational and practical aids designed to help kidney patients lead full lives.

Much of the programme's content stems from responses given to a survey carried out by the National Kidney Federation (NKF) with support from Amgen. This survey helped the NKF and Amgen identify aids which would answer some of kidney patients' problems and concerns and include:

		patient information leaflets created by both Amgen and the NKF, now translated from English into Turkish, Bengali, Gugarati, Punjabi, Hindi, Cantonese and Greek;
		the Food with Though everyday recipe book, written by dietitians specifically for kidney patients;
		and specialist seminars and meetings for healthcare professionals to help them keep up to date and give patients best-practice care, of which the Pre-Dialysis Forum seminars were one series.

To coincide with the launch of its erythropoietin-stimulating drug, Aranesp, the Life in Full programme also includes:

		a video explaining the self-administration of the drug;
		a service which allows healthcarers to arrange delivery of Aranesp to patients' homes;
		a electronic reminder which can be attached to a fridge and is designed to remind patients when to take Aranesp because its administration schedule is less frequent than current therapies; and
		a fashionable rucksack to use when going to dialysis sessions.

Dave Allmond explained the company's thinking behind the initiative.

"Feedback from the many advisory groups we consult with regularly has highlighted that pharmaceutical-company input to support patients is a gap in the holistic care kidney patients need and deserve.

"Our Life in Full programme is designed to help fill that gap.

"We are particularly delighted with the Food with Thought cookbook, which is a fantastic resource with an inviting and easy-to-use format. We have already had many, many enquiries about it and, although we had several thousand printed, we may have to reprint already to keep up with demand.

"Life in Full is a positive proactive programme which will expand as our initiatives with healthcare professionals directly identify further help we can give to help kidney patients lead full lives," Dave Allmond concluded.

Who's who on the Pre-Dialysis Forum Steering Panel

The Forum's Steering Panel consists of eight members.

Frances Coldstream: Panel Co-ordinator and Renal Nurse Consultant at Guys' and St Thomas' Hospital NHS Trust, London

Coral Graham

Valerie Heaney: Anaemia Co-ordinator at Adelaide and Meath Hospital, Dublin

Debi Kendray: Pre-Dialysis Clinical Nurse Specialist at Northern General Hospital, Sheffield

Geraldine McGee: Anaemia Nurse Specialist at St Helier Hospital, Carshalton

Anni Schneider: CAPD Staff Nurse at Western Infirmary, Glasgow

Rosamund Tibbles: Senior Nurse Pre-Dialysis/PD, Bart's and The London NHS Trust, London

Andrea Whitmore: Anaemia Nurse Specialist, St George's Hospital, London

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Potential topics for the November Pre-Dialysis Forum Seminar

Care pathways
Latest research: anaemia and bone management
Hepatitis immunisation in Pre-dialysis patients
Setting standard protocols
Anaemia management
Transition from adolescent to adult care
Sexual dysfunction in renal patients
Acute patients
Palliative/conservative management options
Needs of the elderly renal patient
Assessment for self-care
Care of relatives
The dilemma of offering a choice and being able to deliver
Patient and carer psychological care
Health promotion in the pre-dialysis phase

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Planned aids for the education resource database

Recommended reading for those interested in Pre-Dialysis
Guidelines and advice for preparing patient information: eg, check with local Trust, correct (house-style) font?
Ideas for standard letter that could be prepared locally
Initial assessment check-list
Subsequent visit check-list
Slide series for health professionals to use at patient education sessions
Lists of videos
Sources of patient information: eg, NKF, NKRF
Sources of information for patients in non-English languages

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