September 2015: Issue 02
Newsle&er
www.bspar.org.uk/parents
Editorʼs Letter
It has now been twelve months since I last sat down to collect thoughts and ideas for the first Parent Group
NewsleNer. The last twelve months have brought about a lot of change for the Group, we have been very busy. The first newsleNer was published to coincide with the BSPAR Annual Conference at Leeds Town Hall. We were
delighted to be part of the Conference. It provided a unique opportunity to mix with others in the
rheumatological community and to interact with so many of the chariWes present who provide support for
those with rheumatological condiWons. As part of the Conference, we chaired a meeWng of all the chariWes present which was aimed at improving
communicaWon of rheumatological condiWons within educaWon seXngs. This project has grown significantly
over the last twelve months and is now referred to as the Joint EducaWon Project (JEP). There is more on this
later in the newsleNer.
We also met with representaWves of the pharmacy and dispensing community to discuss the standards of
service. Since then, we have acWvely kept up this communicaWon and have offered feedback on drug informaWon
leaflets which provide guidance for parents.
Further to these acWviWes, we have also offered leNers of support for studies into rheumatological condiWons.
We conWnue to be involved with the HQIP project and have had an input into the Capture JIA and Pennine MSK
Triage projects. Parent Group membership has now reached 12 as we welcome two new members, one from West Yorkshire
and one from Newcastle. Our Chairperson Sharon Douglas made the difficult decision to step down from her
role as Chairperson earler this year and we welcomed Allan Smith into the role. Allan has been a member of
the Parent Group since its creaWon and been acWve on a number of levels offering support and guidance to the
members. Allan steps into the challenging role of moving the Parent Group on further and we wish him luck and
support in this role.
BSPAR Parent Group
Email: parents@bspar.org.uk
Tel: 020 7356 0949
Chair’s Message
My first task as the new Chair of the BSPAR Parent Group is to thank our previous Chair, Sharon
Douglas for steering the Group through its formaWve years and shaping its development thus far.
Sharon has done a fantasWc job and thankfully her wealth of experience and experWse will not be lost
to us as she remains a fully acWve member of the Group. I would like to take this opportunity to introduce the parent Group to new readers and remind those
that already know of us what we are about.
Allan Smith
The Parent Group is made up of 12 members, all volunteers, from around the UK and Ireland, and we
are all experts in our field. That field being, one not of our choosing, we have a child with a
rheumatological condiWon. As a result, we have become experts at living with, and caring for, that child
and thus have some experWse, from an end user point of view, in the NHS and the services it provides.
This experWse was recognised by the professional community of BSPAR who felt it would be useful to
harness this knowledge to help shape services and improve standards of care throughout the UK
We are not a support group for parents, if we are contacted by parents we will signpost them to
support groups and chariWes that can offer assistance much beNer than we can. One of our main
roles is to "communicate not duplicate" work done by others, we are a link between BSPAR, chariWes,
paWents, parents, and if necessary can provide a parent voice to members of the government in order
to achieve our goal.
We are currently involved with the HQIP project, Capture JIA, MSK Triage and have been asked to
support a number of other potenWal future endeavours all aimed at improving standards and
outcomes for paWents and their families. We regularly review literature produced for paWents/parents,
and we were instrumental in seXng up with other chariWes a project aimed at improving the
educaWonal experience of children and young people with rheumatological condiWons. This is an
ambiWous project and sWll in its early stages. There is more on this later in the newsleNer
Whilst we have done some useful work in the last two and half years, we as a Group want to do more.
We recognise that we have not been acWve enough in promoWng ourselves and this is one thing we
would like to address. Of course it is difficult as we are all volunteers with families, busy lives and
funds are limited. However, in order to be a success we need your support. If you have a local event,
please let us know and we will do what we can to publicise it through our social media. If you would
like a BSPAR Parent Group member to aNend an event, with enough noWce we will do our best to
aNend. In order to be a successful sign post we need to know what is happening in your areas and
what local support you have, please keep us up to date. If you have a project that may benefit from
parent group support, do not hesitate to contact us.
Remember, we are your Parent Group, please use us, we look forward to conWnuing to work with
you.
Thank you.
BSPAR Integra<on Announced
Wish to Join Us?
The BriWsh Society for Rheumatology (BSR) and BriWsh Society for
Paediatric and Adolescent Rheumatology (BSPAR) have formally
announced their integraWon at BSR’s spring conference,
Rheumatology 2015.
We wish to invite parents, carers and paWents with direct
experience of paediatric rheumatological inflammatory
condiWons such as JIA or SLE to apply to become members of the
BSPAR Parent Group to ensure that the voice of paWents and their
families leads future developments in this field.
This union of the organisaWons brings together the clinical voices
for adult and children’s rheumatology in the UK and will further
strengthen the society's ability to support its members and the
services they provide to paWents.
The intenWon iniWally, was to recruit 6-­‐8 parents/carers, in order
represent the wider parent and paWent community, by seeking
and collecWng other family views, to share with, and inform,
professionals within The BriWsh Society of Paediatric and
Adolescent Rheumatology (BSPAR) and third sector organisaWons.
However, such was the response, and quality of applicaWons, we
recruited 12. BSR President, Professor Simon Bowman said:
"This is an important step for Rheumatology and our Society as we
can now provide leadership across the enWre age range of children
and adults with rheumaWc and musculoskeletal disorders." BSPAR President, Dr Clarissa Pilkington said: "Bringing the two socieWes together will enable much greater
influence at naWonal and local level parWcularly around the
challenges for paWents moving from children to adult services."
2
We sWll would like to have representaWon in key areas such as
Wales, Northern Ireland and S outh West England, and are looking
to recruit suitable, enthusiasWc individuals to represent these
areas.
Contact us at parents@bspar.org.uk for more informaWon
BSPAR Parent Group Newsle&er
Joint Educa<on Project (JEP)
Possibly the most significant project the group is currently involved in is the Joint EducaWon Project (JEP). This project came out of a meeWng held
at last year’s BSPAR conference. This meeWng was unique in some respects as it managed to bring together all the major rheumatology chariWes
in one room to discuss a collaboraWve project aimed at the EducaWon environment. The goal of the JEP is to develop a number of tools that can be used in the EducaWonal seXng. These tools will be aimed at a number of different
groups as this is a complex and varied environment. As an example the needs of the teaching community will be very different to the needs of
the Children. Furthermore the needs in different seXngs from Nursery/Pre-­‐School, Primary and then Senior school and on to University are also
very diverse. The level of peer group understanding can change between these seXngs. Helping the educaWon staff to understand a liNle more
about rheumatological condiWons will offer them the best tools when dealing with Children who suffer from one of these condiWons.
To achieve these outcomes there has been significant research carried out by the group specifically around packages which are already accessible
within the EducaWon seXng. These may be packages that are relaWng to other condiWons as well as those specific to rheumatological condiWons.
The collaWon of this data will allow the group to assess strategies and situaWons that don’t work and those that do work well for the Children and
EducaWon professionals.
The aims and objecWves of the project have been disWlled into the following:
These resources should help teachers/professionals working in the educaWon sector to:
•
understand the rheumatological condiWon a child or young person in their care has and how it can be invisible
•
understand the limitaWons that the condiWon can someWmes have on a child or young person in their care •
understand what they can do to help the young person in their care stay safe, happy and well when they are in their care
•
realise the importance of good communicaWon between the young person, their parents and the nursery, school or university they aNend
•
realise the importance of their role in ensuring that the young person is fully included in all aspects of nursery, school or university life
•
prevent misunderstanding of rheumatological condiWons
•
raise awareness that young people can be affected by a rheumatological condiWon
•
ensure that the young person’s condiWon is not a barrier to their success at school or enjoyment of their educaWon •
ensure that children/young people with rheumatological condiWons have the same rights and opportuniWes as those without a rheumatological
condiWon have.
UK JIA Treatment Studies
At last years BSPAR conference we had the pleasure of meeWng with Emily SuNon and Katy Mowbray from the University of Manchester. Emily is the BSPAR ETN Study Co-­‐ordinator and Katy is the BCRD study coordinator. Both the Biologics for Children with RheumaWc Disease (BCRD) and the BSPAR Etanercept Study (BSPAR ETN) are research studies about
Juvenile Idopathic ArthriWs that are coordinated by the University of Manchester. It may be the case that you are involved in one or even
both of these studies. If you are then the team have produced a short newsleNer called the Buzz which details some news and updates
from both of the studies. Not only that it has some interesWng informaWon on dinosaurs who believe it or not had types of arthriWs too. More informaWon on the studies and the latest news on these can be found at hNp://www.bcrdstudy.org/parWcipants.asp
If you would like a copy of the newsleNer or to know more about the studies then Emily and Katy would love to hear from you. They can
be contacted at:
Emily.suNon@manchester.ac.uk
Katy.mowbray@manchester.ac.uk
Issue 01, September 2014
3
A Campaign that has generated a lot of support in the past few months is that being co-­‐ordinated by the charity Olivia’s vision to have
Humira and Infliximab made available again by NHS England to those diagnosed with Severe Refractory UveiWs. It was revealed in July that
the intenWon of NHS England was to withdraw access to these treatments. This decision will have a direct impact upon a number of
Children suffering from Juvenile Idiopathic ArthriWs. Children with JIA account for up to 80% of childhood anterior uveiWs cases.
The Olivia’s Vision team has met with NHS England to address the issue and stress how detrimental this decision is to paWents. As a result
NHS England have asked for further informaWon and clinical evidence. Olivia’s Vision aim to have the evidence ready for submission by the
end of October to be reviewed in November. It is hoped that a decision can be reached within three months however no commitments
have been made as to a Wme frame. If you like more informaWon or wish to help with the campaign more informaWon can be found at:
hNp://oliviasvision.org/
Rat Race 2015
By BSPAR Parent Group Member Vicky Green Rat Race Consists of Running 20 Miles….sounds easy, why not add some
obstacles.
I did this challenge on behalf of my daughter who suffers from JIA. I wanted
to raise vital funds for the Joint EducaWon Project (JEP) that the BSPAR Parent
Group are currently involved with and also for the Children’s Chronic ArthriWs
AssociaWon (CCAA) charity.
I am very passionate about doing what I can to raise awareness of JIA and
chariWes that are involved with rheumatology condiWons to help support
other families that are coming to terms with a new diagnosis.
I was also lucky enough to be invited to the CCAA weekend in the Peak District and was able to signpost parents to the BSPAR
Parent Group and make them aware they are not on their own.
Contact Us:
Your BSPAR Parent Group members are detailed below with our respecWve locaWons. We would love to hear from you in relaWon to your
experiences and can be reached on via the following methods:
Web: hNp://www.bspar.org.uk/parents
E-­‐Mail: parents@bspar.org.uk
Facebook: hNps://www.facebook.com/bsparparents
TwiNer: hNps://twiNer.com/parentsbspar
Allan Smith -­‐ Oldham (North East Manchester) at weekends and Aldershot, Hampshire during the week
Terry Cox -­‐ Bedfordshire Wendy Costello -­‐ Co Tipperary Ireland
Anne Meredith -­‐ Wakefield, West Yorks
Michael Kent -­‐ Glasgow
Glenda Dalton -­‐ Leighton Buzzard, Bedfordshire
Chaya Fekete -­‐ London
Sharon douglas -­‐ Edinburgh
Hayley Dale -­‐ Newcastle upon Tyne.
Vicky Green -­‐ Barnsley, South Yorkshire
Shane Kirrane -­‐ Chester
David Parker -­‐ Kilmarnock, East Ayrshire 4
BSPAR Parent Group Newsle&er