Rheum for Improvement Parents Day January 2007

 

On the 27th January, a Parents’ Education Day was held at BCH.   The day was jointly organised by members of the Paediatric &

Adolescent Rheumatology Network Group (Network Group) and PiP.

Parents of children and young people with Juvenile Idiopathic Arthritis (JIA) were invited to this event, which aimed to:  

1. inform parents and carers about aspects of JIA  - the diagnosis, treatments available and recent advances in           treatment  - and share ideas to support the issues around young people growing up with arthritis;

2. explain the work that the Network Group is undertaking, and

3. provide parents and carers with the opportunity to talk about their experiences and concerns, and   involve them in developing services in the future.

The day was well supported, with 30 parents and carers attending from across the West Midlands. (Full report from the day)

Rheum for Improvement Parents Day November 2007

Following the success of the first Parents’ Education Day held in January 2007, this second event was organised. 

The programme took into account the views of those families who attended the first meeting; it aimed to address the needs of those families with a recent diagnosis of Juvenile Idiopathic Arthritis (JIA) and to give an update for those who were returning.

Young people of secondary school age were invited. They joined the morning presentations and had a separate ‘fun’ session in the afternoon, which gave them an opportunity to meet other young people with JIA.

The event aimed to:  

1. inform parents, carers and young people about aspects of Juvenile Arthritis  - the diagnosis,   treatments available and recent advances in treatment and share ideas to support the issues around young people  growing up with arthritis; explain the work that the Rheumatology Network group is undertaking.

2. provide parents, carers and young people with the opportunity to talk about their experiences and concerns, and involve them in developing services in the future.

The day was well supported, with 17 families from across the West Midlands represented.  3 nurses and 1 hospital secretary also attended.  It was particularly pleasing to see 6 young people participating – and presenting!   

There were discussion groups which proved to be extremely useful. The information received during these discussions will assist members of the network group to develop services which will meet the needs of all families and children – irrespective of where they live.

(Full report from the day)

Support Links for parents                                                                           
Children's Chronic Arthritis Association (CCAA)              www.ccaa.org.uk
Choices                                                                             www.kidswitharthritis.org
Kids Unlimited                                                                    www.kidsunlimited.info
Dream Team                                                                      www.dreamteam-org.uk
British Society of Paediatric and Adolescent                   www.bspar.org.uk

Rheumatology (BSPAR)                                                    www.rheumatology.org.uk
Arthritis Research Campaign (ARC)                                 www.arc.org.uk
Arthritis Care                                                                     www.arthritiscare.org.uk
British Society of Rheumatology                                       www.bsr.org.uk
Teenage Health Freak                                                       www.teenagehealthfreak.org
Paediatric Rheumatology European Society                      www.pres.org.uk
Immunisations                                                                    www.immunisation.nhs.uk