Wharfside Patient’s Forum

Notes of meeting held on January 31st 2008

Present:  Bernard Forbes co-chair              Garry Wall co-chair
                Philippe B, Ian T, Frank, Neil, Michael W

Paul Decle: KVN Forum (Chelsea & Westminster, Victoria Clinic and Charing Cross) and HIV Forum Link

Caroline Hart: Sexual Health Pathways and Networks Implementation Manager
Stephen Tucker: Commissioning Lead for North West London and Kensington &               
                           Chelsea PCT.
Judy Hague: Director of HIV Programme, London Specialised Commissioning Group

Apologies: David M, Martin Schwartz, Dr John Walsh, Zoe Sheppard, Parita Shah

The following issues were dealt with at this meeting:

1. Notes from previous meeting
2. Connecting for Health
3. Phoning for Blood results
4. Forum Educational Event
5. Patient Satisfaction Survey
6. Access to GP services
7. Other Business

1. Notes from previous meeting

Agreed

Connecting for Health

Many patients are concerned about the implications of the computerised Care Record System (CRS) which is due to come into effect on the wards of St. Mary’s from May 2008.  The forum queried the possibility of patients attending any training sessions that are arranged for staff at Wharfside.  This is to be further discussed at the next HIV Team Leader meeting and Elizabeth Hesketh Hewson from Imperial College Healthcare has offered to show the forum a demo of CRS at one of our future meetings.

2. Phoning for Blood Results

This has been delayed due to technological issues and most specifically the telephone queuing system.  Zoe Sheppard will update the forum on progress at February’s meeting.

3. Forum Educational Event – update

The event planned for March 15th has received funding of £750 from Gilead.  Invitations have been issued to other Patients Forums across London and there are posters at the Chelsea and Westminster hospital and Mortimer Market clinic.  Interest has also been shown from members of the pan-London HIV Forum Link.  Paul Decle (London HIV Forum Link) offered to put a page about the event onto the KVN website.  Anyone wishing to attend please RSVP to Parita Shah on 0207 886 7718 or email forum@wharfside.org.uk  as this is necessary for catering arrangements.

4. Patient Satisfaction Survey

There will be a review of action points from last year’s Patient Satisfaction Survey at Wharfside at the next forum meeting in February.  The Bloomsbury Patient network have expressed an interest in using the template used at Wharfside to conduct their own satisfaction survey and Paul Decle suggested that the HIV Forum Link would like to conduct a pan-London satisfaction survey at all treatment centres using the Wharfside template.  This would help assess common service problems experienced by those with HIV such as GP access and dentists etc. and may assist other centres starting their own patient’s forums.  It will also be invaluable for comparing services across London.  The survey will be conducted simultaneously at the designated centres and will be facilitated by forum members. 

5. Access to GP Services

Stephen Tucker and Judy Hague spoke to the forum about a pilot scheme in Kensington and Chelsea to improve Primary care for people with HIV at their GP’s.  This is driven by a need to increase the level of primary care provision for people with HIV and is not intended to force people to see their GP for HIV services.  It will be a voluntary pilot scheme and is planned to start with a small number of patients from Kensington and Chelsea (maybe further afield), their GP’s and the commissioners.  The aim is to educate GP’s about HIV care so patients feel confident in contacting them for their treatment.  The Terence Higgins Trust may be requested to facilitate the pilot as an honest broker to promote the scheme.  Previously Wharfside offered HIV training to GP’s and surgery staff but the uptake was minimal and the training sessions cancelled for the last two years. 

Below are feedback notes from Stephen Tucker:

Feedback from Wharfside Patients Forum on pilot HIV Shared Care Scheme – 31 January 2008 (Imperial HIV Patients Forum)

• Chaired by Bernard Forbes
• Attended by patients, one of whom is a resident of Kensington & Chelsea
• Judy Hague – London HIV Programme Director
• Stephen Tucker – K&C Sexual Health Lead
  
• Patients said they would be happy to be involved with the pilot although there were many concerns (see below). Commissioners have talked about HIV and primary care before but there had been no progress.
  
• When patients see their GP they are referred back to their HIV centre, even for things that are obviously not related to HIV, e.g. in-growing toenail.
  
• One patient sees a private doctor from an organisation called Freedom Health. There are two Doctors in the private practice who are trained in HIV and they are undergoing HIV training.
  
• Patients were concerned that if they are associated with a GP practice known to specialise in HIV, that their HIV status will be disclosed, assumed or implied. Under the current regulations patients have to register with a practice in their area. Patients would prefer to register with a practice outside their area/location so that they can remain anonymous and not be known to local residents or the local community.
  
• People were very concerned about practices not being a safe place for maintaining confidentiality and experiencing stigma and disclosure of their HIV status as a result. One patient said they lost their job because their confidentiality had been breached by general practice.
  
• It was suggested that the pilot include more than one approach, e.g. a pilot with a practice or a group of practices and also a pilot with a GP embedded within the outpatient HIV service.
  
• Commissioners should investigate (and learn from) what is happening in this area elsewhere in the UK and abroad, e.g. Brighton and Hove, Germany, Australia and America.
  
• Access was a big concern – patients have to wait a long time to see their GP but can access the walk-in service at the HIV clinic more quickly.
  
• The HIV centre has collected a list of GP’s who see patients with HIV.
  
• Some GP’s will not treat patients with HIV without being funded.
  
• What are commissioners doing about older patients with HIV who, as they get older, will need other services such as social care and housing support? Stephen Tucker said the pilot could also explore these issues and needs.
  
• There was a brief discussion about the Kensington & Chelsea PCT HIV Strategy (recently endorsed by the PCT Board on 29 January 2008). Stephen Tucker will email Bernard Forbes the link to the PCT website where all public papers are published. The Strategy includes recent feedback from HIV patients following a visit to the KVN Forum at Chelsea & Westminster Hospital to consult with patients about the proposed HIV Shared Care Pilot.  As a result of the feedback from patients the pilot will now include looking at embedding a GP in HIV services.
  
• There was concern that the pilot will only be for Kensington & Chelsea PCT residents and that the rest of London and the UK will not benefit. Could all London PCTs be included? Stephen Tucker explained that learning from the pilot will be communicated to the London HIV Consortium and from there into discussions nationally and locally about services for people with HIV. It may be difficult and time consuming to run a pilot in 31 different NHS areas, each with different populations and priorities. It was suggested that the pilot is run jointly with Westminster PCT (which hosts Imperial) and possibly Hammersmith & Fulham PCT as well. Stephen Tucker will investigate this.
  
• There was concern about how the shift of care into primary care would work for people not resident in London. What happens to out of London patients who do not have a GP or do not want to see a GP but need to access services for which the GP is the gatekeeper? They could be forced to disclose their HIV status to a GP in order to access services.
  
• Bernard Forbes fed back recent discussions held by the London Specialised Commissioning PPI Steering Group and Lord Darzi about wrapping care around the patient and the potential to move primary care into HIV services, rather than the other way around. It was noted that the planned community hospital at the St Charles Hospital site in Kensington & Chelsea will in effect become a Polyclinic and could include HIV services.
  
• The pilot must be representative and include people from BME groups and younger gay men.
  
• One patient from out of London reported that they have an excellent, young GP, who trained with a well-known HIV specialist in London. The GP is therefore familiar with HIV and up to date with HIV issues. However, in London, many GPs are from an older generation who have not had the same kind of training or exposure to HIV issues.
  
• An HIV Locally Enhanced Service would attract HIV patients and this would be good from the perspective of building up a critical mass of patients – but the practice would also become known as an HIV practice (see note 4 about confidentiality).
  
• Regular and accurate two-way communication between the HIV Centre and GPs is critical. Wharfside has lost a few medical secretaries (who found other jobs because of Agenda for Change) and the transfer of information to GP’s has deteriorated as a result.
  
• There was a discussion about how primary care would be funded to provide services to HIV patients. Bernard Forbes said that the DoH has published a LES HIV tariff of £212 per patient per year. Stephen Tucker was not aware of this and will investigate.
  
• A patient asked why some non-HIV prescriptions were free and why some were not. There was also a discussion about how HIV drugs are free to patients when prescribed by the HIV clinic but incur a prescription charge when prescribed by a GP. One patient asked why HIV treatment could not be free from GP’s also. Stephen said the pilot would not be looking at patients receiving their HIV treatment from their GP. One patient said they would not want to get their HIV drugs from a local pharmacy.
  
• It was suggested that the pilot could be independently evaluated and a possible candidate was proposed. Stephen Tucker to investigate.
  

Stephen Tucker
Sexual Health Lead – Kensington & Chelsea PCT
1 February 2008
Further information on this can be viewed on http://www.kc-pct.nhs.uk/theboardroom/BoardPapersJanuary2008.htm   see items 2.3 HIV strategy.

6. Other Business

Home Delivery:  Cannot take on any more patients as there is only one person working to capacity with current quota of patients – 400

St Mary’s Hospital ‘Dignity Challenge’:  This item was on the agenda but the outside speaker cancelled due to illness and will come to the February forum meeting.

Disability Living Allowance Review (DLA):  Many patients are currently being reviewed for DLA and there is a link on the Forum website for anybody with concerns about this.

Eye Clinic:  A patient has made another complaint about the Wharfside Eye Clinic booking and running system.  All patients’ are routinely booked to attend at 9am and are given their eye drops 20 minutes before seeing the consultant.  In this case the consultant was replaced by a registrar who arrived considerably late without informing reception thereby severely delaying the clinic so that patients who are working had to leave without treatment as they only had allotted time off from work. The effect of the eye drops were wearing off. This is unacceptable and formal complaints have been submitted in the hope of regularising the clinic booking system and giving patients proper appointment slots and also to ensure the consultant is punctual or at the very least informed the clinic reception of their delay.  This matter has been a subject of discussion since Nov 2006 but seems to be getting worse instead of better. 

It has been suggested that a leaflet be placed at Wharfside for those who are not entitled to free treatment about payment.  This is to be aimed at overseas visitors and patients who don’t live in London.

Next Wharfside Patient Forum Meeting will be on Thursday 28th February ’08 in the MacRae Suite beside the Canal Restaurant in the QEQM building.

Back to Meetings page