CHIVA Networks site visit report

CHIVA Networks
The Children’s National Networks (CHINN) Review 2005 recommended a UK model of practice to develop clinical networks for professionals working with children and families with HIV. The aim of the networks was to ensure that children and families with HIV had access to the same standard of care irrespective of where they live in the UK.

These Paediatric HIV Networks are now well established with Network lead centres linking both into London lead centres and regional local centres. In addition, many areas have regional network meetings that provide support and education for professionals in the region working with children and families with HIV.

What we did
Since 2009 the CHIVA website staff have attended regional meetings and made site visits to London lead centres and regional hubs across the UK and Ireland. We have had contact with over 240 multidisciplinary paediatric staff working with children and families with HIV.

The aim of visiting services and attending meetings is to liaise with CHIVA networks to gain feedback on local needs from CHIVA and to encourage and enable people to be aware and involved with CHIVA and the website projects. Ultimately, by increased involvement with CHIVA we aim to assist professionals and services to overcome the barriers to providing best practice and care for children and families with HIV.

During these site visits we have updated staff on the developments on the website and we have encouraged feedback on the role of CHIVA and the development of the website.

Where we went
We have either carried out site visits or presented at regional meetings in all of the 6 CHINN regions: Ireland, Midlands, North East, North West, Scotland and the South West.

Additionally all the London lead centres have been visited.

What was achieved?
The visits have achieved several things:

Firstly we have had direct contact with a large number of multidisciplinary CHIVA and non-CHIVA members working in the paediatric HIV sector. On questioning, quite a lot of the people attending regional meetings did not attend national CHIVA conferences so this was a unique point of contact.

Secondly, we were able to give people an overview of the CHIVA website projects and update them on recent or upcoming additions to the site. Many people gave positive feedback about the website but equally there were many people who were unaware of newer areas of the website, or who had not used the website for some time, so it was a good opportunity to encourage wider use and involvement.

Some of the meetings were used as an arena to receive more detailed and specific feedback on proposed and existing areas of the site. The comments received in these meetings were fed back to the website team and many were incorporated into the development of pages and areas of the site.

Some of the more detailed feedback is set out below.

Barriers to involvement in CHIVA
One Network Lead identified that their remote location caused them problems in aspects such as attendance at conferences and meetings. This was also a problem for the young people who attended their clinic as they were small in number and came from dispersed locations with few local services. They are therefore very supportive and pleased about the development of the website as a ‘one-stop shop’ which will help them be involved. Similarly the secure youth site will be key to reducing the marginalisation of the young people in their area.

Another Network Lead said that they found communication within their region and beyond difficult because of high staff turnover. They felt this could be helped by the development of up-to-date network contact pages.

What support could CHIVA give regional areas?
There was very positive feedback from site visits about the role of CHIVA and the website as a focal point. Once Network Lead reported regular use of the website and all expressed they were pleased about the continued development of the website. People were most excited about the secure website and the resources section was mentioned as really useful with two centres commenting that they were keen to see the addition of even more resources.

There was feedback as above that further development of the Networks pages would be good to facilitate communication.

New ideas for CHIVA
One centre suggested including notification of regional and national events. They were unaware of the events pages.

Areas to improve
From discussion with delegates at regional meetings there are still lots of local events that are happening that are not being publicised such as mother and baby groups, transition workshops, and nurses meetings. Delegates were keen to see this aspect of the site developed.

Conclusions
The CHIVA website staff have found both the site visits and attendance at the regional meetings to be really useful. The regional meetings are well attended and are obviously of great benefit to professionals so we feel it is important to continue to be involved throughout 2011 and beyond.

One issue that became apparent during the visits was that many of the professionals attending the regional meetings were not CHIVA members. Membership to CHIVA increases knowledge of the information and support provided by CHIVA therefore supporting professionals to provide best practice in their work with children and families with HIV. Little feedback was received as to why many professionals were not members however, the website team feel it is important to try and encourage more of these professionals to join.

Recommendations and Action Plan
1) For CHIVA website staff to continue attending site visits and regional centres to facilitate communication about CHIVA developments and plans and to encourage professionals to feedback about the role of CHIVA in supporting regional services.

2) To develop the Networks pages to ensure they allow space for local centres to publicise the work that they are doing. This will allow professionals to see what other centres are doing, therefore facilitating sharing of good practice and encouraging professionals to link up for advice and support. This will also allow professionals to publicise the great work people are doing in their areas.
Action: The Networks pages are in the process of being rebuilt and will include an events calendar for professionals to publicise their events. There will also be a document store for each region to allow information to be shared. To be completed by summer 2011.

3) To develop the Network pages and ensure that contact information is comprehensive and up-to-date.
Action: As part of the Networks rebuild, more comprehensive and up-to-date contact information will be included. Additionally, a specific contact will be identified in regions and centres, this person will be given access to update their own regional pages to ensure the contact information is current. To be completed by summer 2011.

4) To have on-going liaison with professionals to encourage them to share regional events information.
Action: Continued attendance at regional meetings.

5) To encourage more professionals attending regional meetings to become CHIVA members.
Action: To review the CHIVA membership benefits package and provide information on the membership package at future regional events. Review to be completed by Summer 2011.