Providing Community Support and Social Inclusion for Disabled Children and Young People
at the Ann Tayler Centre
on Thursday 9th October 2008
15 parents attended the group
Professionals attending
Pat Howley
Jenny Menzies
Sheila Ramdular
Patsy (Carers Centre)
Catherine Love
Gillian Goodchild
Chris Henderson
Sheila Ramdular facilitated the meeting
1. Introductions
Sheila Introduced Donatella Soldi, Helena Charles, Sue Davies as speakers, plus Gillian Goodchild, who will be taking over Catherine's role at HFT and Chris Henderson, the new Short Breaks Development Officer.
Chris outlined his role on taking forward the work on short breaks. Sheila said that there would be a need for consultation with families and children and there would be an opportunity to talk to Chris at the break.
Pat Howley told the group about plans for the Ark's garden and asked for feedback.
2. Service Directory
The new service directory, the result of work by Catherine Love, in collaboration with Kunbi Jones and Scilla Morgan, is now available. Copies were at the meeting, but it is also available at the Ark, has been sent to schools, sencos etc.
3. Dr Donatella Solti, Community Enuresis Clinic ('bedwetting clinic')
Donatella outlined the service - it is based at John Scott Health Centre and Lower Clapton Health Centre and is aimed at children and young people aged 5-19 who still have wetting problems above those which might be expected for other children of similar age. The clinic does not see children who day-wet as they have limited resources; these children are referred on for evaluation. The service aims to ease the stigma felt by children and parents and to offer reassurance that it is a developmental problem; the child needs to be ready and motivated to concentrate on wetting in order to achieve continence and the role of the clinic is to be an "outside person", to help guide the child towards achieving this. Treatment might include medication or alarms, though these are not always useful. Donatella explained that the first consultation takes up to an hour, taking a detailed history, including issues at school, though subsequent appointments are shorter. She also emphasized the importance of positive parental encouragement. Questions and points from parents:
- Many families are not referred as GPs don't always know of the clinic.
- Families can self-refer, though there is an average 2 month wait for consultation
Helena explained the continence service role in providing nappies, particularly once children grow too big for shop-bought ones. Nappies are not stored within pct premises but are provided direct to the child's home every 12 weeks, which does mean a parent needing to stay at home all day to take delivery, although the delivery can be made to school instead. Pull-ups are not provided, except in special circumstances: Helena will assess whether the child understands the idea of pull-ups - Parents need to be responsible for letting the clinic know if the child has grown and needs larger nappies. The service also supplies plastic sheets etc. Questions & comments from parents:
- Contact with the service is very poor - phones often not answered, messages not returned.
- Is there an option for a text phone service for a hearing-impaired parent? Helena said there is a mobile number for texting (however, this is not for general dissemination)
Sue explained the role of the inclusion team at the Learning Trust in supporting children with Special Educational Needs in mainstream settings, and her particular role with children who have medical needs, including continence. She works with parents, schools and the PCT. She will liaise with parent, senco and any other relevant professionals to chat about the child's needs and plan what should be done e.g. timetabling toilet breaks etc to minimise disruption to the curriculum and maximise child's privacy and dignity, and arrange training for LSAs etc in catheterisation or other procedures. The inclusion team provides guidance for schools in managing these issues, if possible involving the child in discussion. Referral routes to the team can be via the senco, PCT, self, Parent Partnership. Sue's role also covers diabetes care, medication etc - this might include liaison with other members of the inclusion team for children with complex needs.
Feedback and questions from some parents suggests that in practice schools are not always mindful of the child's dignity and there is often confusion about who is responsible for changing soiled nappies etc, with parents sometimes called in from home to take the child home. Humiliating for the child. Inclusion only effective if schools aware of continence issues. There is a designated nurse and doctor for every Hackney school (though not necessarily on-site) whose role is not to change children but to consult on moving the situation on.
6. Feedback from groups
Parents were asked to consider the continence service: what was their experience and how might things be improved?
Group 1
- Generally a very good service, helpful staff
- Medication works well, mat not very useful and alarms wake everyone in the house!
- Referral via GP - long wait, but worth it
- Would like answers to why children might be incontinent
- No-one used enuresis clinic and only one parent used nappy service - accesses nappies via GP, no problem with this
- Has to buy own pull-ups, which is expensive, would like a mix
- Suggested a voucher system to exchange for nappies
- Communication problems - several parents have not heard of either service, neither have many GPs
- Others have problems in making contact with it; answerphones, recorded messages, unreturned phone calls.
- What help is available for children who wet or soil during the day?
- What is psychology of wetting? Explanations would be helpful.[Donatella fed back that she doesn't always have the answers and parents vary in their information needs - she will attempt to tell them what they want to know]
- Lack of clarity re school staff remit eg LSA or school nurse?
- Publicise clinic via GPs, web-sites, schools, Children's Centres & other places children congregate eg adventure playgrounds, Huddleston Centre, Kids, after school clubs etc
- Short film about incontinence
- Posters
- Enuresis clinic to produce an information poster for dissemination
- Clarity needed on LSA job descriptions re continence procedures & responsibilities in school
- Telephone number for continence services are inaccessible
Direct line 020 7683 4912
John Scott HC switchboard 020 7683 4700
Helena Charles at the Ark 020 7014 7111
PCT to clarify numbers and improve response
8. Grapevine
Jenny and Lucy want to start a drop-in service for parents at the Ark - please let them know when is best, am or pm, days etc.
9. Announcements
David Graham and Richard Spellar wish to increase parental involvement in the Ark and were at the meeting to discuss a proposal to formalise parent consultancy. They would like two parents to attend meetings at the Ark to work with staff in providing a more integrated service as paid parental consultants, either as a fee or as expenses. There is a small budget and they propose: 30 hours per year at £25 per hour, on a 3-year contract. In answer to questions from the floor the following information was also supplied.
- Parents would need to register with the PCT as consultants, with details of bank etc and would therefore be self-employed, deal with their own tax, NI; there is no opportunity for being placed on payroll
- Possibly advertising in Hackney Today, with formal selection process including parent(s) on interview panel
- HFT invited to give input on how parents would represent all parents
- Training needed is up for discussion
- Tight timescale - advertise in October, recruit in November
- Need specified for a proper job description, support and training structures
Catherine was thanked for her contribution to HFT.
10. Future meetings
6th November - Learning Trust and Education
4th December - Play
Participants were asked to suggest topics for 2009 meetings.
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