Parent Group

About us

The BSPAR parent group is a group of enthusiastic parents, there are currently 11 of us from around most the UK although we have yet to find members for Northern Ireland, Wales and the North East. All of us have experience of paediatric rheumatology through our children, the majority of whom suffer with JIA.
The group was set up in March 2013 as part of BSPAR (British Society for Paediatric and Adolescent Rheumatology) - a specialist society linked to the RCPCH (Royal College of Paediatrics and Child Health).

Our purpose is to represent views and experiences within BSPAR and elsewhere in order to inform and influence decisions. In addition we are to build relationships with charities and other organisations in order to establish a common purpose and combine our efforts.

Can you help?

We wish to invite parents, carers and patients with direct experience of paediatric rheumatological inflammatory conditions such as JIA or SLE to apply to become members of the BSPAR national parent forum to ensure that the voice of patients and their families leads future developments in this field.

The intention initially, was to recruit 6-8 parents/carers, in order represent the wider parent and patient community, by seeking and collecting other family views, to share with, and inform, professionals within The British Society of Paediatric and Adolescent Rheumatology (BSPAR) and third sector organisations. However, such was the response, and quality of applications, we recruited 12. We still would like to have representation in key areas such as Wales, Northern Ireland, South West and North East England, and are looking to recruit suitable, enthusiastic individuals to represent these areas.

Please download the BSPAR Parent Group Application Form.pdf BSPAR Parent Group Application Form.pdf  or contact us at parents@bspar.org.uk for more information.

A Step Towards

At our first meeting we discussed our own experiences and from this came a list of 10 key points for those with a new diagnosis to consider - ten things we wish someone had said to us!

  • The time from diagnosis to sorting out medication may be a roller-coaster ride; it gets better as time goes on.
  • Medication may take time to sort out and take effect but it works.
  • Don't panic, you are not alone, charities and contacts including social media groups are here for support.
  • Know the name of your child's condition and ask for information on it.
  • Prior to clinic or other medical appointments, take photos, keep a diary/storybook, note any questions as you think of them.
  • Positive attitude towards treatment and hospital visits will vastly improve your child's experience. (Cry and shout behind closed doors).
  • The medical staff are on your side, be open and endeavour to have a good relationship with them all.
  • Know the contact details and numbers of the relevant medical team.
  • Inform your child's nursery/school of their condition so that they may understand the circumstances.
  • Do not blame yourself and take time to be a family.

 

Getting in touch

We can be contacted through the BSPAR Parent Group Admin Officer
Tel: 020 7356 0949
Email: parents@bspar.org.uk

Newsletters

Newsletter issue 1.pdf Newsletter issue 1.pdf

Newsletter Issue 2.pdf Newsletter Issue 2.pdf

Parent Group Meetings

2013

2014

2015

 

 

News:

BSPAR 2014 Annual Conference Attendance

BSPAR 2015 Annual Conference