Health Education Northwest

Integrated Care Demonstrator Site

Developing a Carer Skills Passport for parents and carers of children and young people with complex long term conditions

Steering Group Meeting Minutes 22nd September 2015 15:00- 17:00

Present
Dr Lynda Brook, Macmillan Consultant in Paediatric Palliative Care
Jennifer Bayliss, Specialist Nurse Carer Skills Passport Project /

Jacqui Rogers, Transition Nurse, Alder Hey /
Paula Keating, Edge Hill University /
Kate Knighting, Edge Hill University /
Leanne Turner, Community Respiratory Physiotherapist, Alder Hey /
Moira Rooney, Redbridge School /
Mim Davidson, Community Respiratory Physiotherapist, Alder Hey
Pam Howard, Nurse Social Worker Manager /

Elaine O’Brien, Long Term Ventilation Nurse Specialist, Alder Hey / Elaine.O'
Apologies/ circulation list
Caroline Doyle, Community Children’s Matron /
Jill Griffiths, Palliative Care Nurse Specialist, Alder Hey /
Steph Jackson, Physiotherapy Manager, Alder Hey /
Anna Oddy, Children’s Palliative Care Nurse, Greater Manchester /
Ingrid Bell, Children’s Continuing Care Commissioner /
Jennifer Hurst, Divisional Director of Nursing, Aintree /
Kerry Jones, Parent /
Cheryl Brindley, Alder Hey Homecare Manager /
Hilda Gwilliams, Deputy Director of Nursing, Alder Hey /
Hannah Ainsworth, Equality and Diversity Manager, Alder Hey /
Anne Evans, Adult District Nursing /
Melissa Swindell, Human Resources, Alder Hey /
Karen Kay, Risk Management Alder Hey /
Linda Partridge, CEO Well Child /
Lizzi Aizlewood, Parent Voices Count Facilitator /
Gail Hewitt, Quality Improvement Lead Nurse, Alder Hey /
Alison Williams, Children’s Services Commissioner, Liverpool CCG /
Sandra Deane, Divisional Manager, Liverpool City Council /
Christine Bellis, Adult District Nursing, Liverpool /
Merseyside and Cheshire NHS Continuing Care Commissioners /





Liz Johnson, Programme Delivery Manager (Children and Maternity) /
Agenda item / Main discussion points / Action/ outcomes / Owner/ timescale
Welcome and apologies / As above
Action notes from the last meeting / Agreed as a true record
Training Needs Assessment /
  • Comments have been received from professionals and feedback from two families on the TNA and changes to be made
  • The question arising from the meeting was to identify wording to differentiate where a parent or carer had received formal structured training rather than observing someone perform the task and then copied them
  • Discussed non epileptic seizures being on the TNA and 3 people from the previous meeting didn’t want us to remove this
  • It was decided, due to time constraints, professionals who know the families will telephone or mention the TNA to families rather than taking it out in person as this will delay things.
  • We discussed doing a briefing for schools in case parents ask – via Leanne – send letter going to families

  • Printing of the TNA will be this week and they will be available next week
  • Jenny will co-ordinate sending out the TNA and phoning round will be carried out by professionals known to the families.
  • As a guide 20 TNA will be sent out to each agency.
  • Schools carers employed by school and 121 education learning support assistants to also be sent a TNA – check this with Julia Stoddart. Decided to send approximately 10 TNA per school.
  • The closing date for completion of the TNA will need to be at the end November.
  • Survey monkey to be used only if it is needed
/ JB
JB / October ‘15
October ‘15
Library of competencies / Considering the competencies
  • Jenny has been in touch with Leanne Turner. TCU have band 4s who do training over seen with band 6s. Homecare and CCNT, Zoes and Claire house - Getting competencies and training packs off all to see what people are doing in each area
  • Adult services - need to discuss with Aintree how they train their carers and families
  • To consider the Coventry and Warwickshire competencies
  • Jenny is meeting Alison Flynn, ENT nurse
  • Jenny has met with Elaine Obrien LTV nurse
  • Well child nurse Scotland link with Jenny to get in touch with for national competencies to compare and contrast
  • Aim to bring all together then looking who is most appropriate to look at each competency area with in the domains
  • Discussed child specific versus generic training and competencies
  • Discussed how much assessment is needed and by whom to sign off as competent
  • Design the format of competencies to include assessment needs at different levels
/ JB
JB / December’ 15
December’ 15
Carer Skills Passport /
  • Discussion around the Passport like a red book for child and carers
  • The same passport for carers and parents as they will need the same skills
  • Need to have disclaimer about individual being signed off and care plan and will follow that with an individual child’s details
  • Sign off to say competent on that date and time And that there is a responsibility of the person who has been signed off to ensure they maintain their comptenencies. Disclaimer that the person signing off is only signing to say that that on that date and time they have observed and assessed the individual as competent

Well-Child Apps /
  • Paula Keating discussed the Edge Hill Well-Child Apps in gastrostomy, trache care, oxygen and suction.
  • There were issues with the Apps and the platform needed to be changed and re-written to transfer over
  • The Apps can download to PC, laptop, phone etc. Paula was not sure whether The APP alerts the individual to update their competencies or whether when the core materials are updated there is an alert to the parent or carer
  • The Apps have basic information of the trachea etc, some video footage of how to carry out procedures
  • The self-assessment/quiz at the end of the App does not say the parent is “wrong” but they are prompted to “look again” try again etc

Training programme and timetable /
  • Discussed linking the App and use as part of training that Jenny is going to carry out in school - need to get Well-Child permission to use the app for this for Redbridge
  • The programme for training is not ready yet and will need to be flexible, due to Jenny being recruited later. The timeline has been re-done with the start of Jenny’s post.

Directory of accredited trainers/ /
  • The trainers also need to be signed off themselves, including undertaking updates to ensure competence
  • Competent and confident were discussed and used interdependently. Agreed this is not same thing but both are important.
  • Who is training the trainers for agencies
  • Leanne and Mim are providing training for courtyard and charging for their time
  • It was suggested that Nurse Specialists for example in tracheostomy or epilepsy would be the specialist resource to train other professionals and update them. These other professionals would then be available to train parents and carers
  • Engage with care companies to ask for competency framework
/ JB
JB / January ‘16
January ‘16
Human resources / Melissa Swindell HR is in a new role and probably the reason why she hasn’t been able to meet to discuss governance issues and the honorary contract. Lynda to try and push this along. / LB / October’15
Impact Analysis /
Evaluation /
Workshop /
Any other business / Pam gave update on nurse social work programme with Paula
  • 5 programmes nationally
  • Some issues as 3 years very short time to be trained to do both
  • Now 4 years masters programme
  • Currently learning disabilities and children, will eventually be for all areas of nursing
  • 5 of them in the current cohort with Pam at Alder Hey
  • Need robust communication styles
  • Part of team with tasks to do and lots of supervision and support
  • Now first 2/5 have all chosen to do nursing alone
  • 5 that have just been appointed doing social work part first

Next meeting / Tuesday 12th January 2016 2-4pm
E5 in the Faculty of Education
Edge Hill University
Viewing of the simulation suite at 4pm TBC

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