Regional PID Patient Meetings

2015

  • The Immune Deficiency Patient Group of Wales (IDPGW) meeting at the Village Hotel Whitchurch Cardiff at 6pm on the 20th April. E/mail idpgw@gmail.com or visit the website www.idpgw.co.uk to register. Read their latest newsletter here.
  • Celebrating 25 years of bone marrow transplantation the Great North Children's Hospital in Newcastle upon Tyne is holding a 'Patient and Family Day' at the Great North Museum in Newcastle upon Tyne on Saturday 9th May from 9am-1pm. If you would like to attend this event please email roz.gale@ncl.ac.uk.

2014 

  • The Immune Deficiency Patient Group of Wales (IDPGW) Annual Event, 18th November. Read the write up from Tommy Browne of the IDPGW here.
  • North West Regional Immunology patient day, Saturday 15th November 2014, Haydock Park Racecourse. Read the talks and highlights of the day here.
  • The Immune Deficiency Patient Group of Wales (IDPGW) meeting on Monday the 29th September.
  • Oxford University Hospitals and John Radcliffe Hospital patient day, 20th September.
  • Patient/GP engagement event for Birmingham Hospitals on the 11th September.
  • Centre for Immunodeficiency (CID) and UCL partners Patient and Family Educational Day, 21st June, London.
  • The Immune Deficiency Patient Group of Wales (IDPGW), 7th April.

2013

HAE UK Patient Day, 16th November 2013

At this well attended event Ann Price, Trustee and Founder of HAE UK, updated the audience on how much HAE UK had achieved since its launch in October 2010, the challenges some patients still face in getting best care and plans going forward to support patients with Hereditary Angioedema (HAE) and Acquired Angioedema.Dr Mark Gompels discussed the need for clinical skill in the diagnosis of HAE because of the variable way it can present medically, the role of shared care and how empowered 'expert patients', in control of their own condition, can lead to better patient outcomes. Dr Hillary Longhurst introduced the new Clinical Commissioning Policy for the treatment of HAE and described it as 'a major step forward' in how HAE patients can access the medicines they need in England, with funding coming centrally rather than through GP budgets. This policy does not, as yet, cover Scotland or Wales, but these areas are likely to be highly influenced by its adoption in England. John Dempster and Christine Symons, Clinical Nurse Specialists who care for patients with HAE, discussed the benefits of home therapy and how everyone should be considered for this, alongside a personalised care plan.

Hull and East Riding Patient Group Event, 16th October 2013

Patients and their family members enjoyed an informative and relaxing evening with hospital staff from Castle Hill Hospital-East Yorkshire Adult Allergy and Immunology Centre. The evening covered how the services work and asked for patient opinion on the shape of services going forward.

The evening also marked the retirement and the long and prestigious career of Consultant Immunologist, Dr Philip Dore, who has worked in the Hull area from 1986. Dr Dore gave a humorous view of the many changes in the NHS he has experienced and described the evolution of the immunology services he was instrumental in developing in Hull. The meeting also welcomed Dr Pavel Gordins, as a new member of the immunology team,joining Consultant Dr Mohammed Abuzakouk and Dr Nakonechna and the nursing team headed by Jackie Moor.

Patients’ forum launched for Immunology Services at Central Manchester University Hospital

The launch event in April, and a follow up event in October, brought together patients and members of the Immunology team to discuss how patients can help shape the future of local services. ‘Patients can give us valuable feedback on their experiences of our services that we can learn from. This all about working in partnership’, the Central Manchester Team said.

The North West Immunology departments are working to arrange another patient forum event.

West Midlands Immunology PID Patient Day 2013, 29th September 2013

Over 92 patients and family members attended the patient day hosted by the Immunology Team, led by Dr Aarn Huissoon and Dr Scott Hackett from Birmingham Heartlands Hospital.  Topics covered included information on immunology services, how they are now funded, research on CVID, gut problems in PIDs, dietary advice, the production and safety of immunoglobulin products and advice on traveling when you have a PID.  The meeting also introduced the local patient support group the West Midlands Immunology Group (WMIG). You can read the full report on all the topics covered here.