Notes of the Annual Patients’ Evening of the Immune Deficiency Patients’ Group,Wales,held at the Victor Salvi Room at the Wales Millenium Centre,Cardiff Bay at 1815hrs on Tuesday 18th November 2014

Present: A list of attendees.

Dr Stephen Jolles Consultant Immunologist & Honorary Senior Lecturer

Dr Tariq El-Shanawany, Consultant Clinical Immunologist

Dr Paul Williams Consultant Clinical Immunologist

Emily Carne Advanced Nurse Practitioner & Lead CNS Immunology & Allergy

Sister Charis Joyce Practitioners in Immunology & Allergy

Mo Moody laboratory

David Mathew Chairperson / (Temp Secretary)

Michelle Davies WHSSC

Dr Susan Walsh PID

Andy Long Patients Advocate

Tommy Browne IT Consultant and Treasurer

Tracey Browne

Nigel Morgan

Karen James

Jean & Roger Parrish

Paul & Karen Eustace

Claire & Jean & Terry Puxley

Kay Tugwell

Cara Jenkins

Graham & Maragret Roscoe

Sharon Hale

Kate Iglis

Julie Powell

Naomi Lovesay + friend

Sue Manetta Jones

Melita Bowan

Mark Smith

Fiona Southwath

Darren Williams

Bethan Evans-Mason

Janice Howells

John Anthony

Anne Young

Jan & Steve Mauder

Dave Brockway

Gwen & Grace & Daniel Davies

Deryn Coffey

Mike & Jill Parry

1.Introductions and Welcome

David Mathew welcomed everyone and introduced the principal speakers and personnel for the evening, Dr Stephen Jolles, Dr Paul Williams, Sisters Emily Carne and Charis Joyce together with Michelle Davies from WHSSC and Dr Susan Walsh from P I D (UK), noting in particular how good it was to see so many at the event. He paid tribute to the hard work done by Tommy Browne in establishing and developing the Web site and encouraged those present to use this wealth of information.

2.Sponsors

Appreciation was expressed to the sponsors of the evening for their kind support. A letter would be sent by IDPGW, thanking them individually

  1. IDPGW and what we have done so far

David summarised much of what had been happening during the year and spoke in particular about the Group’s involvement alongside the Clinical Team with the WHSSC Audit and the significance of bringing a patient led focus to this process

  1. Patient Experiences

Andy Long presented his experiences, based on his Hereditary Angioedema condition, bringing emphasis to his ability to continue full time work, as a consequence of the care he receives from the Clinical Immunology team.

Jean Parrish then gave a short presentation on her Primary Immunodeficiency condition and focussed on her ability to have taken a really enjoyable holiday to the Norwegian Fjords with her husband Roger, as a result of the care programme she undertakes with the Team.

  1. Welsh Hospitals Specialised Services Committee(WHSSC)

Michelle Davies with whom the Clinical Team and IDPGW have been working closely was warmly welcomed. A very informative address from Michelle then followed; her principal points are summarised below:–

  • WHSSC role is to ensure that there is equitable access to safe and effective care, provided across a wide spectrum of disciplines.
  • The Seven Welsh Health Boards contribute to WHSSC, which is delegated responsibility for financial support for a range of services.
  • Immunology is very much part of this process.
  • Planning and funding of these specialised services within Wales including Liverpool and Manchester is within the WHSSC responsibility
  • Audits are conducted annually across several specialisms, including Clinical Immunology, Neuropsychiatry, Neuro rehab and Spinal injury rehab et al
  • The next Audit Day is to be held on 12th December and IDPGW will contribute alongside the Clinical Team with Patient Stories and other material.
  • The purpose of the Audit is to provide a forum to review and discuss audit data, to network and share experiences.

The Audit Day Agenda is outlined below;

    1. Introduction Dr S Jolles
    2. Key Performance Indicators(KPI)
    3. Home Visit Audit
    4. Patient Survey Results
    5. Patient Stories
    6. New Developments
  • Clinical Team Developments/Update from Dr S Jolles

 

  • Service Developments include the following;-
  • Charis Joyce is appointed full time to the Adult team and Gillian Rasal has joined to take on paediatrics
  • Research Nurses, Colin Price and Beck Holland
  • Clinical Scientist Rachel Steven
  • Biomedical Scientist Kath Bramhall
  • Academic Core Management Trainee Mark Ponsford

UK PIN Accreditation has been awarded to the Team

Home Therapy Contract; the search for a supplier for an All Wales contract for services required is actively being pursued

Research Studies under way include

  • BPL Study
  • Baxter Study
  • Clozapine Study with 70 patients
  • Sub Clinical Infection Screening
  • Neb Study et al

Dr Jolles then expanded on the SIFD Syndrome, which he described as a novel antibody deficiency and how flexibility was important with a lot of options for therapy, including subcutaneous pathway to blood and a flexible approach in the event of missed doses.

Sister Charis Joyce then presented the outcome of the Patient Survey conducted by the team

Sister Emily Carne then presented a paper on the Home Visit (HV) Audit

  • 52%(92) patients infuse at home
  • Initial Training, then 4-6 infusions followed by an assessment
  • Annual Home Visit for two years, then every two years
  • CNS clinical visit every 6 months
  • ‘phone support[immediate] as required
  • The Audit demonstrates increasing pressure to reduce services, but also how vital this service is to the patient population

The main conclusions of the Home Therapy Audit were:

    1. Preventative Intervention does work
    2. Important to build home visits into service development
    3. Predictive evidence for appropriate HV intervals
    4. Training Drift
  • Additional safety is offered by HV over and above clinical approach
  • Primary Immunodeficiency(UK) or P I D (UK)

 

Dr Susan Walsh was welcomed and then gave an address on PID UK

  • PID started work in July
  • Working actively to build membership, since the demise of PIA
  • Wishes to work closely with IDPGW and other patient groups
  • Helps with advice on travel, Insurance, tips on holidays, employment rights etc.
  • Feedback on Welsh Rare Diseases consultation
  • In certain areas there had been no Consultant Immunologist since 2009,so Wales was a Leading force in Immunology

Dr Walsh encouraged those present to affiliate to PID, but emphasised that their work was complementary to IDPGW.

  • IDPGW Patients’ Questionnaire

 

David then ran through the initial findings of the questionnaire conducted by the Group and told the meeting that these would be summarised in the forthcoming Newsletter and would inter alia form the basis of our work for 2015

  • Open Forum

 

A number of issues were raised and the Clinical team helped to clarify some of those debated in the meeting.

In particular there was some concern expressed about the need for the message from patients to be heard by decision makers within the NHS hierarchy. How to manage this in the most appropriate way would be considered by the Group.

The evening concluded at 2047hrs and was followed by a Buffet supper, providing an opportunity for those present to “network”.

David thanked everyone for coming and trusted the evening had proved enjoyable and informative.

DGM 24/11/2014