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 Tuesday 12th January 2016 2-4pm
E5 in the Faculty of Education
Edge Hill University
Viewing of the simulation suite at 4pm
PresentDr Lynda Brook, Macmillan Consultant in Paediatric Palliative Care /
Jennifer Bayliss, Specialist Nurse Carer Skills Passport Project /
Jan Maguire, Community Matron, LCHPaula Keating, Edge Hill University /
Ingrid Bell, Children’s Continuing Care Commissioner /
Leanne Turner, Community Respiratory Physiotherapist, Alder Hey /
Circulation ListElaine O’Brien, Long Term Ventilation Nurse Specialist, Alder Hey / Elaine.O'
Jacqui Rogers, Transition Nurse Lead, Alder HeyMaire Rooney, Redbridge School /
Paula Keating, Edge Hill UniversityElaine O’Brien, Long Term Ventilation Nurse Specialist, Alder Hey / Elaine.O'
Leanne Turner, Community Respiratory Physiotherapist, Alder Hey /
Elaine O’Brien, Long Term Ventilation Nurse Specialist, Alder HeyApologies/ circulation list / Elaine.O'
Maire Rooney, Redbridge SchoolJacqui Rogers, Transition Nurse, Alder Hey /
Elaine O’Brien, Long Term Ventilation Nurse Specialist, Alder HeyCaroline Doyle, Community Children’s Matron / Elaine.O'
Gail Hewitt, Quality Improvement Lead Nurse, Alder Hey /
Kate Knighting, Edge Hill University /
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 /
Mim Davidson, Community Respiratory Physiotherapist, Alder Hey /
Pam Howard, Nurse Social Worker Manager /
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) /
Verity Ford /
Alison Williams /
Agenda item / Main discussion points / Action/ outcomes / Owner/ timescale
- Welcome and apologies
- Action notes from the last meeting
- Agreed as a true record
- Training Needs Analysis (TNA)
Recipient / Number of questionnaires sent / Group / Total
Cohort of 48 families / 48 / Alder Hey cohort / 48 to Cohort
Millstead Primary School / 20 / Special school
Redbridge High School / 20 / Special school
Royal School for the Blind / 1 / Special school
Princes Primary School / 12 / Special school / 62 to Special Schools
Lime Court Day Centre / 3 / Day Centre / 3 to Day Centre
Home care / 80 / AH Care agency
CARSS / 20 / Private care agency
Pulse / 20 / Private care agency
Carers Trust for all / 0no children at present / Private care agency
CRG / 20 / Private care agency
Just One / 20 / Private care agency
Natural Breaks / 10 / Private care agency / 170 to care agencies
TOTAL 283
- Discussed and agreed that the TNA responses highlighted the need for training and the Carer Skills Passport
- Phase 3 follow up interviews from the workshops held in school. Only one replied and this has not been completed yet due to their child being unwell. Paula has this booked in now
- TNA evaluation from Kate Knighting attached. Kate suggests there is scope for a paper on the training needs analysis
Domains respiratory and breathing, resuscitation and administration of emergency medication scored the highest of priority in training requested by parents and carers.
Jenny rang 20 parents to enquire if they had received and completed the questionnaire (TNA). Some parents said they had been ‘doing it ages’ and didn’t need any training. Most of the interest expressed was in resuscitation. One parents asked for NP airway resuscitation because they had never received it.
We discussed asking professionals known to families to re-contact them to ask about the questionnaire (TNA) to try and increase numbers. Jenny to send the list of patients out to the relevant professionals and ask them to make contact with the families.
Paula will give more information once this has all been considered.
Paula is checking on a final date to allow more time.
Findings from the TNA replicated the feedback from parents re: wanting resuscitation training. / Interview with parent to be held
Contact professionals and resend questionnaire
Complete analysis of TNA and complete final report / Jenny ASAP
Paula/Kate MayMarch 2016
- Library of competencies
Jenny gave an update of where she is up to within the domains of the carer skills passport.
- Suction (oral, nasopharyngeal, tracheal)One of the challenges encountered in updating and writing competencies has been getting all of the paperwork in line with one another. The specialists within each of the domains all have their own documentation and there has not been an Alder Hey format that has been followed by all.
- Competencies for oral and tracheal suction have been updated and agreed between professionals. The tracheal suction competencies are being amended by Alison Flynn Certificates of training and competency now includes a list of competency achieved, so that the level of training and competency can be seen by organisations, employers etc at a glance
Saturations monitors and training package
Buccal medication – epilepsy team does training – knew about issues in school – teaching school nurses but school nurses cannot then do teaching; epilepsy nurses offering teaching at alder hey for buccal meds and seizure management? Reduced attendance to do carer skills passport – if going off site and then need rescue – epilepsy nurses have trainined school nurses to train school staff – school nurse role needs clarification before can take it forward
Resuscitation – Alison Flynn paul ritson looked at DVD
Some discrepancy regarding if it was satisfactory for use eg Velcro tapes for tracheostomy
Update but not needed at present
Resus more or less ready to go
Abdominal massage training wasn’t what jenny thought it was; jenny and phsio lee evans have started putting together something on abdominal massage; physio will teach and pilot – jan hospice to home carer complementatry therapies qualified jan mcg will pass on details
Pain and sleep child and parent with these
How to learn to sleep with carers in the house
Stopping little things becoming big things
Suction (oral, nasopharyngeal, tracheal)
- Competencies for oral and tracheal suction have been updated and agreed between professionals. The tracheal suction competencies and full tracheostomy package have been updated by Alison Flynn and working group.
- Paul and Leanne are still updating the nasopharyngeal suction competency. It was decided at the nasopharyngeal suction meeting to go with the terminology ‘nasal suction’ and ‘nasopharyngeal suction’. There needs to be an awareness that in other areas this may mean a different way of measuring. Physios would do the assessment on the child or young person and document what is needed.
- An example was given by Jan Maguire where ambulance crew wouldn’t do blind suction but would pass NPA and then do suction because of their training and protocol
- The Physiotherapists and Claire Halfhide want to do study to see exactly where we are suctioning
- Discussed how to remain competent for training. CCNT nurses felt as they do not practice nasopharyhgeal suction it was difficult to remain competent. They currently teach the theory whilst not knowing the childs airway. Gemma Roach suggested organising for CCNT/Homecare to spend time with the physios so they can assess parents and carers competently
There has been a discrepancy identified in the way NP suction is performed by nurses and physio’s in Alder Hey, and how it is taught at Edge Hill University. The fundamental difference is in the technique used to measure to ascertain how deep to insert the catheter rather than the intended part of the child’s anatomy the suction catheter is intended to reach or the objective of the procedure. We are having meetings around this to try and come to an agreement. The physio’s feel deeper NP suction keeps some of the complex children out of hospital, however nurses aren’t taught this in university and feel unhappy to practice. This is a national issue that has never been resolved. The next meeting is on Friday, Consultants in respiratory and ENT have been invited to establish a way forward.
An oral suction teaching session has been organised and is planned for 11th February in Redbridge High school with Jenny and Leanne Turner. This will involve trialling a mixed group of parents, carers and teaching staff. There will be two back to back training sessions, so that the children can be cared for and the training can be offered to everyone. The groups will be asked to complete pre and post questionnaires to review progress.
- Edge Hill University are in the process of finalising some training apps which we are keen to utilise should be granted permission. The app on oral suction would fall under the domains of the carer skills passport. The app has not yet been finalised.
Trial oral suction training and evaluation / JB/all Mar 2016
JB/LT Feb 2016
Oxygen
- The competency format is a different format to the suction formats and is being updated in line with the suction competency formats.
- A respiratory training day has been discussed and to be arranged. Parent and carer packs are being updated with simplified language by O2 Nurse Carol Lawrence.
- Carol will carry out training in this area due to the complexity of the equipment being used.
Identify date and time to trial training / JB/CL Mar 2016
Saturation monitoring
- Jenny has put a teaching pack together and is writing competencies for this which will be sent out to a group of professionals to feedback and approve. This domain has been identified as a train the trainer area, therefore Jenny can carry out teaching session on this.
Identify date and time to trial training
Buccal medication
- The Epilepsy nurses are keen to run sessions themselves rather than ‘training a trainer’. They feel it would be difficult for a TtT to answer more complex questions. It might be that a more generic session is arranged due to their capacity for training. They have a new member of staff starting and anticipate they will be able to provide training in May.
- Sessions are currently run monthly at Alder Hey but are often cancelled due to capacity. School staff cannot attend these sessions as they cannot get away from school.
- Discussions with the Epilepsy nurses have included running future training sessions at Redbridge and Milstead Schools for ease of access for parents, carers and school staff.
- As an emergency situation cannot be assessed, nurses prefer to provide a certificate of attendance.
- There have been discussion surrounding signing off as competent for administering buccal medication. A question has been asked as to whether buccal medication can be practised during training sessions with water. This has not yet been decided.
- The carer skills passport would ideally need carers to be signed off as competent but this needs to be agreed with the Epilepsy nurses who will be providing the training.
Feb/Mar 2016
Nebulisers
- Jenny has almost completed writing a teaching plan. Competencies for nebulisers have been reviewed during the tracheostomy review.
- The format is different to the suction competencies, Jenny is changing this so that they can be standardised. This will be finalised once she has met with Alison Flynn.
Identify date and time to trial training / JB/AF Mar 2016
Resuscitation
- Jenny has attended resuscitation training with the resuscitation team Russell Ashworth and Pete Arrowsmith and is up to date.
- Pete said Jenny could teach basic resuscitation to parents and carers having attended this session and with a nursing qualification. Mannequins and equipment can be borrowed from the resuscitation team
- Pete trains a maximum of 6 parents and carers and they already have competencies and lesson plan which Jenny can utilise. The competency format is a different format to the suction competency format. The resus DVD is used during the training sessions and the scenarios on the DVD are used. Parents and carers then have the opportunity to practice.
- Alison Flynn wanted to review some of the tracheostomy resus on the DVD. A meeting has been arranged to do this.
- There was a discussion around the resus team being the experts and whether this should be questioned.
- The resus DVD will be reviewed from a tracheostomy point of view and also as there is no NP airway resus training.
Develop supplementary training package for NP airways and tracheostomy resuscitation training / JB Feb 2016
JB/AF/RA/PA Mar 2016
Boundaries and confidentiality
The real life scenarios that Jenny wrote were filmed with actresses and are being edited at present. The scenarios will be used in 2 hour Boundaries and Confidentiality mixed sessions with parents and carers, to highlight the issues and difficulties that can arise and how best to deal with them or escalate appropriately. Example discussed of parents and carers sharing phone numbers and not realising the implications. Jenny to send the link to the scenarios with the minutes once the film edits have been done.
Suggested names for the Boundaries and Confidentiality sessions from parents were Stop and think/ keep calm or cool off/ care with care/ care with boundaries
Boundaries and Confidentiality sessions could commence from around June 2016.
Boundaries and confidentiality
Jenny has been working with psychologists Clare Chamberlain-Parr and Jody Etheridge to plan a session on confidentiality and boundaries. This is to try and help parents and carers recognise and respond appropriately to any issues they come across with the aim of preventing care packages from breaking down.
With the help of various professionals, parents and carers Jenny has written 4 real life scenarios that parents and carers come across on a regular basis that can cause issues.
Lynda has suggested using actors act out the scenarios for filming. Sessions with parents and carers will discuss the scenarios and look at different ways of dealing with them.
Clare and Jody have drafted out a session plan, Jenny and Lynda are meeting with Clare and Jody to discuss this. / Complete preparation of teaching materials
Identify date and time to trial training / LB/JB/CCP/JE Mar 2016
LB/JB/CCP/JE Mar 2016
- Directory of Accredited TrainersTraining session at Redbridge
A further capacity analysis is needed as if there is insufficient capacity within the system this needs to be addressed. Alternatively it maybe that the actual capacity is not the issue but rather the competing demands of other parts of the professional roles and the variation in demand for training week on week
Domain / Specialist Trainer / Trainer theory / Trainer practice
Suction - oral / Leanne Turner / Jenny Bayliss / Jenny Bayliss
Suction - NP / Leanne Turner / ? / CCNT
Suction- Trache / Alison Flynn / Alison Flynn/ Paul Ritson / Alison Flynn, Paul Ritson, Homecare, CCNT
Nebulisers / Leanne, Alison / Jenny Bayliss / Jenny Bayliss
Saturation Monitoring / ? / Jenny Bayliss / Jenny Bayliss
Oxygen / Carol Lawrenson / Carol Lawrenson / Carol Lawrenson
Buccal medication / Andrea McLaren/ Anne Sweeney / Epilepsy Nurse / Epilepsy Nurse
Resus / Russell Ashworth and Pete Arrowsmith / Jenny Bayliss / Jenny Bayliss
Boundaries and confidentiality / Clare Chamberlain-Parr/ Jody Etheridge / Clare or Jody/ Jenny Bayliss / Clare or Jody/ Jenny Bayliss
- Two oral suction teaching sessions were held on 11th February in Redbridge High school with Jenny and Leanne Turner. This involved trialling a mixed group of parents, carers and teaching staff. 40 participants were invited to attend two back to back training sessions so that the children could be cared for and the training could be offered to everyone. The first group included 2 parents and 7 teaching staff, the second group included 6 teaching staff. The groups were asked to complete pre and post questionnaires to review progress. The highest mark of 7 was scored in all areas and feedback was excellent. The 2 parents said they liked being involved in training in a mixed group and found it useful. There was more conversation around teaching the content of the
Shorter sessions or drop in before after school
Redbridge 40 people invited – 18 attended in 2 different sessions
2 parents in parents session – lots of conversation and relevant
Did make training take longer but helpful need to have session at the end to reflect on issues
School staff session went more to plan fewer questions all done in 2 hours
Parents may have been less interested in oral suction
Developed e-reader – add in details of online programme
Can add in surveys to this and tests and videos and an app and certificate
Could have staff doing refresher traiing online overnight
Competency forms signed off on oral suction training – set up a folder on trust K drive for specialist nurses to access
Parent would be responsible for their own training - parents if doing direct payments or personalised budget would be responsible for
LCH use SIRS database for education health and care plans
Next phase look at processes for infrastructure for direct payments/ personalised budget
Competencies will be available online at k drive but who needs these outside the trust and how could they get hold
Website is now a priority to put competencies on that and set up peer review on that through website and training links / Table capacity analysis for discussion at next meeting / JB/LB Apr 2016
- Training programme and timetable
- Oral suction teaching session has been put together and is planned for 11thFebruary in Redbridge High.
- Evaluation to include appraisal of the benefits and challenges of training parents and carers together as well as confidence pre and post the training session. Evaluation forms can be based on the format used in the TNA
- Other training sessions TBC.
- Human resources
- HR have advised of the checks that need to be carried out for carers from agencies to reach into the hospital setting and continue to care for the child when they are admitted.
- An honorary contract has been put together.
- A list was sent from HR of what is required from agencies but Jenny felt this wasn’t very clear so she will put a list together. Elaine O’Brien has devised her own documentation.
- Elaine has found the honorary contract works well depending on who you deal with and which ward.
- Elaine agreed to send her documentation to Jenny
- A supporting policy will also be required
- Passport format
- Discussed the many versions of passports being worked on. Lakshmi Ramasubramanian holding teaching session about hospital passport 3/02/2016 which Jenny will attend.
- The hospital passport is a huge project by itself. Jenny will produce a basic carer skills passport for their competencies to be held in.
- Impact analysis
- This will be completed by the end of the month. The report will be part of the final report and be shared at the next meeting
- Funding and next steps
- The final report is due at the end of January
- At the same time a business case is being put together so that the carer skills passport can continue to develop. Leanne Turner and Ingrid Bell suggested providing case studies that could contribute towards this.
- Any other business and date and time of next meeting
14:00 – 16:00 Alder Hey Children’s Hospital
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