Creating a PenCRU Handbook Meeting
Tuesday14 October2014
Veysey, Room 006
Present: 5 x Family Faculty -Tricia, Julia, Ursula, Ruth, Alan,
4 x PenCRU - Chris, Sharon, Katharine, Anna
Remote input:3 x Family Faculty - Lynn,Josie, Liz
Apologies: 3 x Family Faculty - Kirstin, Katherine, Penny, Jen, Jane
Purpose
The Handbook should provide a clear statement of how PenCRU and the Family Faculty work together. It was defined as something that could be used as a point of reference rather than as an introduction to the unit to be given to all new Family Faculty (FF) members upon joining the FF. Print copies will be available on request but the intention is not to produce large quantities as this is expensive. The full document will be placed on the PenCRU website but it is being created as a printable item not an electronic document as PenCRU does not have the in-house experience or budget to create this.
It is important that the handbook has co-ownership between PenCRU and the FF, and is not dictated by the team.
Contents
We discussed the draft copy of the handbook Katharine had circulated with reference to 3 main points:
- Does it contain everything we need and want?
- Is it clear and easy to understand – plain English?
- General format and overall ‘look’
It was agreed that the Contents’ page was daunting in its present format and it was suggested cutting down the level of detail to a single headline title for each section. Add ‘Complaints procedure’.
More colour injection in borders and lines, etc. to make it more graphically appealing. It was suggested creating the document in Publisher rather than Word to achieve this look. However, it was noted the document made available electronically should be converted into PDF format or similar to allow access for a greater number of readers.
The order of the current contents was unpopular. After discussion if was suggested to follow the order:
- Welcome notice. Written in a personal style from the Family Involvement Coordinator, with an accompanying picture and ending with an introduction to the other members of PenCRU staff, alongside pictures again. The main item could be surrounded by quotes from FF members selected to counter a range of possible concerns/barriers prospective new members may be envisaging (on the topic of what they get out of being involved with PenCRU).
- PenCRU Mission Statement. Similar to that used in the annual report. Would be useful to make reference to the kind of conditions covered by PenCRU’s research here.
- Statement on the purpose of the Handbook – or this could be included in the welcome notice, depending on how detailed we want it to be.
- Contents page. Short and succinct with clickable sections online.
- Contact details. Possibly to include a picture of where we are based (either University or Devon in general). This could be moved to the end of the Handbook as long as it is clearly signposted on the Contents page where it is.
- What is PenCRU and what do we do?Try to capture it isn’t just about C&YP and their conditions. It is about the whole family experience – parents and siblings and society in general too.
Don’t get bogged down in definition of neurodisability – add to appendix and timeline. Phrases ‘and other related conditions’ and ‘issues are shared across conditions (sleep, toileting)’ useful to utilise here.
- Timeline. This should be made more of than at present. This is an ideal place to mention Cerebra funding, formulating a definition of neurodisability, etc. It was suggested the end of the line could say ‘date you joined the Family Faculty?’. This could be presented vertically and/or with a wiggly line to allow more information to be included. Images too.
- Membership - What does it actually look like?Cover both what is expected of you and what can you expect to get out of your involvement. Mention expenses, lunch, etc. but without full policy details, save those for the appendix.
Be clear about options for remote input here.
Back up everything with quotes from FF about the particulars of what FF actually ‘do’ as opposed to empowerment element which is covered on Welcome page. Suggestion to use a graphic of a jigsaw puzzle possibly with each quote on a piece or utilise a Word cloud.
Consider detailing a case study – dentistry as came from parental suggestion?
Involvement ‘Removes the blinkers’
Image – use Mary’s maze but with researchers and familytrapped in the maze andFF and PenCRU Team directing them from above, to show that it is a reciprocal learning relationship?– ‘making sure the research’s direction is targeted and ends up being applicable and useful’.
Quotes for inclusion where relevant
‘An opportunity to meet other parents, who have now become my friends’
‘A chance to use my experiences in a positive way’
‘To be able to come and make use of my intellect saves my sanity… people forget we had responsible jobs before we became carers’
‘It’s a way for me to be visible’
‘There is two-way communication’
‘My experiences are adding to the puzzle…every piece is important and necessary to make up the complete picture’
‘It’s as much about what I can learn from other members as what I can offer’
‘It’s given me the confidence to pursue other things outside of the family that I wouldn’t have considered possible before my involvement with PenCRU’
‘I feel valued equally without having to make the same level of commitment’
‘We are not alone… shared experiences… it isn’t just me… ‘
‘Research that is grounded in our families’ lives’
What is involvement?
We would like to capture what it means for our Family faculty members to be involved. We carried out an individual post-it exercise where people noted down what involvement in PenCRU means. This also prompted discussion about involvement. Some feedback from this discussion and from the post-it notes are below:
What does involvement mean to you?
Family feeling of togetherness, unity and being listened to.
Being able to extend opportunities to get involved and to learn.
Personal experiences are more ‘relevant’ than a diagnosis.
Doing what you can to add to the jigsaw.
Learning.
Building the structure of future research.
Building confidence.
Feeling valued.
Expertise.
Involvement mean attending meetings and offering input using professional and non-professional experience.
Making hidden disabilities visible.
Being visible.
Adding dimensions.
Widening involvement.
Extending knowledge.
Taking away the blinkers.
Being involved in person, or virtually by skype for example.
Parents and professionals working on equal levels.
Using personal experiences, learning new supports.
Other Forms/Policies
It was agreed these should be kept together in an appendix and not mixed throughout the handbook.
They should all be available online and should be easy to find by clicking on a link from the contents page on the electronic version.
Photo/video consent forms – met with general approval. FF understood that contacting individuals on every occasion we wished to use an image was impractical to enforce.
Facebook Forum – FF did not like tone of first guideline which seemed to assume an intention to be disrespectful. Suggested wording ‘treat people in the same way as you would face to face’.
Additional Details Contact form – it was discussed that we receive very few of these back. FF felt that having a box for ‘diagnosis’ could be off putting if this had not been agreed for their child. A suggestion was made to be very open and ask ‘Tell us about you and your family’ but it was agreed this was too open and would mean a likelihood of collecting information we would not use. Suggestion made to replace with: ‘details of your child’s additional needs’ possibly with additional tick boxes for ‘learning’ ‘physical’ and maybe others.