MINUTES OF STOMA MEETING ON THURSDAY 30th APRIL 2009 AT STANDREW’S HOUSE, EDINBURGH
Attendees
Anne Demick, IA
Ray Goddard, Colostomy Association
Hazel Pixley, Urostomy Association
David Thomson, NHS Greater Glasgow & Clyde (Chair of National Review Group)
Elaine Pitcairn, Scottish Government
Stephen Tither, Scottish Government
Jane Walker, Scottish Government
Deirdre Watt, Scottish Government
Apologies were given from Jonathan Pryce who had been called away to deal with pandemic flu-related issues.
Deirdre Watt in welcoming everyone to this meeting provided a background on why this approach had been adopted. She indicated that since the last national review group meeting in January had involved a large number of people with a lot of issues to get through. it was felt that it would be more helpful to discuss the main issues in a smaller group so that the Scottish Government could fully understand and appreciate the concerns of patient representatives’.
The Scottish Government is in the process of setting up two further meetings with contractor groups and NHS Board representatives and hope this will be completed by early-mid June at which point recommendations will be made to Ministers before the Parliament recess.
David Thomson chaired the meeting.
- Minutes of last national review group meeting
Draft minutes had been circulated and any comments were invited to be sent to Elaine Pitcairn.
- Key issues:-
A paper listing key issues was handed out to aid discussion.
- Patient choice of product
Anne Demick said the minutes of the last national review group meeting reflect a lot of concern from all sides about choice of product. She believed the introduction of a formulary will reduce patient choice and that by the time this becomes apparent, it will be too late.
The patient representatives felt that patients would not usually know which products were available so it would be for healthcare professionals to decide what they receive. However, nurses may focus on a limited number of products and not be aware of new products. Hazel Pixley said that nurses are not allowed to request samples so that restricts what is available to patients in a particular hospital. Ray Goddard thought that patients would see the formulary as their total choice and would not know they could access other products. David Thomson acknowledged this was a reasonable risk and said it would be necessary to emphasise the availability of other products outside the formula.
David Thomson and Jane Walker advised that formularies offer a way to manage resources and are commonly used in health services. Formularies do not restrict choice or access to products - any appropriate product for a condition is generally available in Scotland. In addition, nurses know what products are available and use clinical judgement on which product is most suitable. Nurses are able to order in one-off samples.
It was mentioned that the Drug Tariff contains a very extensive list of products. David Thomson clarified that there is no attempt to restrict any manufacturers in Scotland. Although some companies may not have any products in the formulary, the products would still be in the Drug Tariff so would still be available to patients.
Anne Demick asked how nurses currently find out about the variety of available products. It was explained that there is a variety of ways – the industry is helpful as manufacturers raise awareness and there are also professional groups.
The patient representatives generally could not see a difference between the proposals and sponsorship. The Scottish Government explained the benefit of the formulary is that it is optional and would target certain products based on the best clinical evidence available. Ray Goddard suggested that all companies should be looked at on a regular basis with products reviewed. The Scottish Government agreed to discuss with National Procurement colleagues how often the products should be reviewed.
Action: Scottish Government to discuss product reviews with National Procurement.
The patient representatives suggested that the most popular products are not on the formulary and those on it are little used. This reflects the result of the assessment and that historical patterns of usage may not represent cost effectiveness for the future.
Action: Scottish Government to compare prescribing and dispensing data against the formulary list to look at which products are being used.
Action: Scottish Government to ensure nurses know they can go outwith the formulary.
- Customisation
Anne Demick referred to the review group’s draft report which stated that customisation may be offered. Stephen Tither clarified that it was never the intention to reduce customisation as an option.
There was some discussion around the fact that new patients are offered customisation while many longer-term patients cut their products themselves. Anne Demick advised that if customisation was not available, more sizes would have to be on the Drug Tariff. There can also be accidental waste when patients cut their own supplies.
David Thomson explained the English system has customisation as an advanced service while Scotland is seeing it as a core service which should be offered by all DACs and community pharmacies. The Scottish service standards make it clear that wherever the patient accesses the service, the DAC or pharmacy has to get the product customised.
In England, accessories such as wipes and disposal bags have been put on the Drug Tariff. Stephen Tither advised that the Scottish Government as part of the review has said that it would look at doing the same by associating accessories with products.
- Patient choices of service provider and delivery
David Thomson provided an update on NHS Greater Glasgow & Clyde’s plans. Their specification has been amended and circulated to their steering group. It will still be very much a pilot phase. Anne Demick had major concerns about Glasgow’s plans to have one supplier. David Thomson said that the evaluation of the pilot would look at patients’ concerns and also find out why patients went to a particular supplier.
- Access to samples and new products
This issue had been touched upon in earlier discussion. It was felt that the current system is not working as often nurses cannot order samples so the patient has to order them and go back to the nurse to try them. Stephen Tither advised that some nurses are saying they do not have difficulties in obtaining samples but it seems only to be an issue in certain health boards. A starting point would be to have samples available for all products on the formulary. Anne Demick highlighted that nurses also need the right accessory products (which may be component pieces e.g washers) to work with the samples.
Action: Scottish Government to raise this issue at the forthcoming meeting with NHS representatives and nurses.
Action: Scottish Government to look again at which Boards cannot access samples and Jane Walker to check when stoma nurses network are next due to meet.
- Annual review
Ray Goddard was concerned that nurses’ time could be stretched if they have to conduct reviews for all patients, meaning they would be unable to see the patients that really need assistance. It was felt that annual reviews would be a burden on patients if they hadto, for example, take time off work for a formal appointment.
The original proposal was not for an annual of compulsory review, rather that there should be a regular opportunity for a review to which the patient would be entitled but which would only be held if wished by the patient.
It was clarified that the annual review would not need to be a formal appointment – it could take the form of a telephone call or questionnaire which would not require patients to take time off work. The intention is to ensure that there is consistency of service across the country.
The Scottish Government recognised there was a need to make sure that patients understand they should get in touch with their stoma nurse as soon as they have a problem and not wait until the annual review. It should also be proactive on the nurse to make contact with the patient. Vulnerable patients might not be as proactive as others in seeking help and an annual review would be a mechanism to ensure those patients have the opportunity for a review if required.
Hazel Pixley referred to research being conducted by the Urostomy Association which is finding that people are having leakage problems but not changing their products. This suggests patients do not know that other products are available and/or their expectations are low. David Thomson asked for a copy of the research once complete.
Action: Scottish Government to make clear that the annual review is optional, also that it does not have to be a formal appointment.
- Who should act as prescriptions gatekeeper
Anne Demick suggested that once a stoma nurse has provided advice on products, the GP should be responsible for prescriptions as they have overall responsibility for the patient and will be aware of their other medications/conditions.
Jane Walker said that District Nurses could be involved if they have the expertise and training in stoma – and they would have back-up from specialist stoma nurses. District Nursesin their generalist role often see elderly patients in their home and refer to specialist nurses. An alternative model could be for the stoma nurse to prescribe.
Hazel Pixley thought a nurse may be more likely to pick up on any problems than a GP. Anne Demick was strongly of the view that the GP should be the person responsible for prescriptions. David Thomson clarified that the prescription would still come from the GP Practice, whether written by the GP or stoma nurse.
The main issue was who is responsible when the product changes. The patient representatives thought in the future that prescribing would have to be from the stoma nurse. Stoma nurses advise on products with the GP then writing regular prescriptions. If product changes were necessary, the patient would see their stoma nurse.
Action: Scottish Government to make clear to patients that any development in the way prescriptions are processed will not result in inconvenience for patients.
- Audit
David Thomson acknowledged the patient representatives’ concerns regarding the lack of audit on monitoring compliance with the service specification. The Scottish Government was of the view that there was a baseline from the audit report published by NHS QIS last year, however, Anne Demick disagreed that this offered a baseline.
David Thomson advised that in NHS Greater Glasgow & Clyde he has seen very few complaints on the quality of the service so there may not be a need for a further audit.
Stephen Tither said the Scottish Government could look at another audit in due course but there was a question over timing and on what the audit would be intended to examine as there was no agreement on this at the last meeting. The QIS audit identified a need for training of nurses and involved patients but did not show up problems for patients in product delivery. Neither subsequently had there been significant levels of complaints from patients, suggesting that there not was an immediate service problem requiring to be addressed.
It was accepted that there was a need for future audit plans – an audit process should be built into the new arrangements to be brought in next April. Following changes next year it could therefore be appropriate to conduct an audit in 2010 to examine particular issues.
- Patient buy-in to product evaluation process
It was noted that patient involvement in selecting formulary products was being addressed and considered.
- Complaints procedures
The patient representatives thought that patients were more likely to contact suppliers with problems than community pharmacies and that nurses help to resolve immediate problems. The Scottish Government would not wish to discourage this but there is an issue around collecting information on complaints and sharing it with NHS Boards.
Action: Scottish Government to discuss this issue with suppliers and Boards.
- Next steps
Deirdre Watt thought it would be beneficial to redraft some sections of the review group’s report e.g the sections on prescriber arrangements and annual review, and send it back to the patient representatives to test out the wording.
The Scottish Government is due to meet with the other 2 groups (suppliers/contractors and stoma nurses/Board representatives) in early June. Following these meetings a decision will be taken on whether there is a need to go to a more formal consultation process. She advised the patient representatives that the Scottish Government would be in touch with them in June to provide an update and reflect on the discussions from the 3 meetings in redrafting the report.
- AOB
No further issues.
Scottish Government: Primary Care Division
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