Project News:

Second ‘Rheum for Improvement’ Day  - held on 10th November - Wolverhampton Medical Institute

Following the success of the first Parents’ Education day in January, a second day was held on 10th November.  The programme responded to the views given by those families who attended in January; it attempted 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 day was once again very well supported - with 17 families represented from across the region.  It was particularly pleasing to see 6 young people attending. It is anticipated that the Education day for parents and young people will become an annual event.

A number of presentations were given, including one by Clive Ryder, Consultant Paediatric Rheumatologist, on ‘Advances in treatment, diet and vitamins’ - a topic that had been suggested by parents at the first event. 

One of the ‘highlights’ of the day was a thought provoking talk given by a young person, Leigh.  Leigh was first diagnosed at BCH at the age of 11 - following delays in diagnosis.  Leigh shared his feelings openly and described the negative aspects  - and the side effects  - of the drug Methotrexate.  Leigh also showed how to give a talk - without using notes!

Leigh’s presentation led to an interesting debate about how much information should be given to young people about treatments and their side effects, and how this may influence their decision.  It highlighted the fact that each situation is different, and depends on the age and maturity of each young person, and the clinical situation.  The importance of a multi-disciplinary team was emphasised.  The roles of Clinical Nurse Specialists and Therapists (usually only available at the tertiary centres) who have the specialist skills, knowledge and time to spend with the child / young person - and support them through difficult times - are important.

The discussion groups led to a number of important issues being raised, which members of the Steering Group will take forward.   As with the previous event, the importance of having the ‘right’ staff - in the ‘right’ place, being able to give the ‘right’ treatment without unnecessary delay - was considered paramount.  There were also several ‘new’ ideas, two of which are worth mentioning here:

•  the production of a DVD which can be shown to other professionals - and to commissioners of services - to highlight the issues that are important to the families and young people themselves; 

• the production of a ‘flow-chart’ which can be given to families (in particular to parents of ‘newly diagnosed’ children).  This would demonstrate what they can expect to happen following diagnosis in terms of treatment and further management.

Members of the Steering group, who will continue to meet during 2008, will consider these, and the other ideas put forward.

Many parents were keen to be involved with promoting the development of the rheumatology network, to ensure the provision of an excellent and equitable service for all children and young people across the partnership area.

We are grateful to staff from the organisations ‘Kids Like Us’ and the Children’s Chronic Arthritis Association, who attended and supported the event,  and to the many families who have offered to work with members of the network group in various ways in the future.

Work of the Network Group - 2008

The main areas that will be focussed on include:

 - Developing standards of care and referral pathway guidelines;

 - Increasing the involvement of the parents of children - and the children themselves;

 - Ensuring a consistent approach to the provision of drugs and home delivery services.

NHS Networks

The  Network Group has been registered on the NHS Networks website.  This can be accessed as follows: 

• networks.nhs.uk/networks/page/1106

Related Papers and Reports:

Minutes 18/09/09

Minutes 12/06/09

MInutes 25/04/2008

MInutes 18/01/2008

Minutes 21/09/2007

Information for Parents:

For information regarding the 'Rheum for Imorovement' parent's days and full report, please go to the Paediatric Rheumatology for Parents Link on our home page.