1. Disabled Children’s Action Group 17 July 2012 Feedback from the pinpoint parent carer participation network meetings Autumn 2011 – Spring 2012

2. Background – the pinpoint parent carer participation network set up to pilot Cambridgeshire’s parent carer involvement model developed by parent carers and practitioners working together adopted in the Children’s Trust Parent Carer Involvement Strategy

3. Background – Cambridgeshire’s model

4. Parent carer participation network One county-wide network ‘Partners in Commissioning’ 5 district networks: around 160 participants, including 80 parent carers Local networks: around 1200 participants, including 900+ who get our e-mailings; 270+ who are parent carers plus 275 who expected to be; 45 who are facilitating a parent support group; PPS; SCIP; schools; Children’s Centres; and so on

5. Parent carer participation network action groups: time-limited, e.g. Addenbrooke’s action group – which led to the introduction of a hospital passport agenda events: one-off topic-focused events e.g. behaviour workshops

6. Parent carer participation network – parent representatives decision-making groups: 13 strategic/operational groups commissioning panels: short breaks; Disability Information Service; ASC school interview panels: Parenting Support Manager; Disabled Children’s Services Manager; Early Support staff parent focus groups

7. Parent carer participation network – information, support and resources good practice kit: downloadable tools; parent representative agreement viewpoint: participation information; who’s who; good practice training: participation; self-confidence; gathering views support: pre-meetings; help with accessing documents; for groups and individuals information: e-newsletter; e-events update; website; events; workshops; office; phone; text; email; social media

8. Parent carer participation network – monitoring and feedback network meeting notes and actions network meeting actions feedback parent representatives reports parent representation summary reports on key findings meetings with Director of Children’s Services contract meetings with Lead Commissioner newsletters: e-newsletter; viewpoint website: online forums emails social media: coming soon!

9. parent carer participation network meetings The network meetings are an opportunity for partnership working: openness and transparency different balance of power shared ground rules self-confidence independent facilitation support

10. parent carer participation network – reporting on key findings Autumn 2011: involve parent carers in deciding budget priorities for Children & Young People’s Services and the County Council we asked parent carers about the support they needed most at the first point of diagnosis or identification of need (early intervention) we then asked parent carers what they thought the County Council’s budget priorities should be

11. Parent carer participation network – key findings from Autumn 2011 7 key themes Emotional support – a listening ear, someone to talk to so I feel less isolated (22) Access to support from other parents in a similar situation - including through groups for all families (21) Better signposting – easily accessible information on all support that is actually available to all the family including statutory/non statutory, locally and elsewhere (20)

12. Parent carer participation network – key findings from Autumn 2011 Access to ongoing support for me – help me to help my child (17) Information on and about the disability or condition (11) Honest and sensitive support at birth of point of diagnosis (11) Understanding, supportive, knowledgeable and well-trained staff (11)

13. Parent carer participation network – key findings from Autumn 2011 Other themes that emerged were the need for: Early and planned access to respite - including sleep help in the home (8) One person, one point of contact (6) Support from early years services - including early years team, Early Support, nursery, Portage, Early Birds, CAMHS ADHD course (6) Access to counselling - including genetic counselling (5) Extra time from health visitor - in the home (5) Specialist educational support (4) Quicker access to services - less time wasted (4) Childcare - including parent groups where school/health staff are there too (4) To be listened to (4) Ongoing relationship support (3) Help to carry on working - understanding from employers (3) Non-judgemental support with managing behaviour for parents, and training for teachers (3) Support from a paediatrician (3)

14. Parent carer participation network – key findings from Autumn 2011 Particular support needs mentioned by 1-2 parents that we felt were worthy of mention in their own right: Education around process of diagnosis (2) Clearer information on what is and is not funded by social care, and if it is means tested (2) Help with caring for and supporting siblings (2) Support for the whole family - 'Team Around The Family' (2) Information on financial help available for me (2) Specialist advocacy for parents (2) Easier and simpler process to diagnosis (2) Consistency between workers so it is not dependent on which worker you get (2) More staff who know what support is available (2)

15. Parent carer participation network – key findings from Autumn 2011 Ongoing bereavement support (1) Housing and equipment to be ready in place (1) Better coordinated hospital appointments (1) Stability (1) One building where all professionals are (1) Breastfeeding help (1) Continuity between medical and educational inputs (1) Support when no diagnosis found (1) Someone to explain how the "system" works so parents don't have to find out for themselves (1) Independent information, including on our rights (1) Schooling (1)

16. Parent carer participation network – key findings from Autumn 2011 We also asked parents about other pressure points in their life. These are reported on in the individual notes, and often focused on points of transition. The notes can be downloaded by following links to the individual district networks from this website page: http://www.pinpoint-cambs.org.uk/get-involved/the-pinpoint- network/for-parents-of-disabled-children http://www.pinpoint-cambs.org.uk/get-involved/the-pinpoint- network/for-parents-of-disabled-children

17. Parent carer participation network – key findings from Autumn 2011 We noted that: much of the early support parents needed most might be provided by health workers health representatives did not usually attend our district network meetings big changes due to way health and mental health services are provided nationally and locally - Health & Social Care Bill 2011

18. Parent carer participation network – Spring 2012 ‘hot topic’ What makes a good health service? How will the proposed changes to health and mental health services respond to the support needs of parents and carers, and to the issues parents and carers have raised?

19. Parent carer participation network – Spring 2012 workshop planning used 7 key themes from Autumn 2011 as our starting point added other themes that could be included as sub-themes a revised order and a new top priority

20. Parent carer participation network – Spring 2012 workshop key themes New top 7 Understanding, supportive, knowledgeable and well-trained staff (33) Emotional support – a listening ear, someone to talk to so I feel less isolated (31) Better signposting – easily accessible information on all support that is actually available to all the family including statutory/non statutory, locally and elsewhere (29)

21. Parent carer participation network – Spring 2012 workshop key themes Access to ongoing support for me – help me to help my child (26) Access to support from other parents in a similar situation - including through groups for all families (21) Information on and about the disability or condition (15) Honest and sensitive support at birth of point of diagnosis (13)

22. Parent carer participation network – feedback from Spring 2012 meetings 7 key themes presented to parent carers Comments relating to themes recorded Comments relating to lesser themes already identified added Comments not relating to any existing theme added separately This is what parent carers said…

23. Parent carer participation network – feedback from Spring 2012 meetings Emotional support – a listening ear, someone to talk to so I feel less isolated (22) Open House pre-diagnosis support/advice Including for siblings How to find out about/access family therapy negative impact on families when they do not get this support or get misinformation

24. Parent carer participation network – feedback from Spring 2012 meetings Access to support from other parents in a similar situation, including through groups for all families (21) “crucial” to parents and there needs to be better signposting to voluntary groups Sharing advice from other parents

25. Parent carer participation network – feedback from Spring 2012 meetings Better signposting – easily accessible information on all support that is actually available to all the family including statutory/non statutory, locally and elsewhere (20) More staff to know what support is available (2) Specialist advocacy for parents (2) – legal information; LA to follow the rules – and repercussions when they don’t (1) Independent information, including on our rights (1) Information on independent services i.e. psychologists Provide information on ALL services not just those you are prepared to fund

26. Parent carer participation network – feedback from Spring 2012 meetings Access to ongoing support for me – help me to help my child (17) Individual approach to supplying equipment Good SALT training to enable and empower us

27. Parent carer participation network – feedback from Spring 2012 meetings Honest and sensitive support at birth of point of diagnosis (11) – several new comments on this Speech therapist etc to own up if they don’t know how to help child’s needs Not keeping info back from parents Doc/NHS expert, interested, respectful, pro- active, acts on suggestions Insensitive professionals – this might be your 25 th diagnosis this year but it was our [first]

28. Parent carer participation network – feedback from Spring 2012 meetings Further investigations not offered with [diagnosis] of autism only interested once epilepsy [diagnosed]. Since then has been very comprehensive. Explanation of diagnosis in language that is understandable to a ‘non-medical’ person Appropriate information dependent on parent’s capabilities Access to services dependent on parents as opposed to child’s difficulties/diagnosis

29. Parent carer participation network – feedback from Spring 2012 meetings Understanding, supportive, knowledgeable and well-trained staff (11) – lots more comments on this in each district except Hunts (1) Clarity to who is providing the service Communication – training for staff Professionals to be honest and candid about what your child NEEDS – stop fobbing you off!

30. Parent carer participation network – feedback from Spring 2012 meetings Staff training – IAPT, cognitive behaviour, including school nurses Lack of quality services i.e. speech therapy CAMHS – more comprehensive No consistency and continuity of staff seeing children – cuts and changes to good CAMHS staff Key worker Travelling further to access paediatricians (e.g. moved Wisbech to Doddington)

31. Parent carer participation network – feedback from Spring 2012 meetings What about older years? (in relation to discussion about better delivery of Early Support) How to ID the right kind of service & support? eg OT, SALT, etc. Especially in mainstream. Need core offer in mainstream schools UK – equal services. Can we ask for our own SLT?

32. Parent carer participation network – feedback from Spring 2012 meetings Services that work well: Diabetes clinic ‘brilliant’ and going cross-border Visual impairment service works well – is it easier with one diagnosis? Occupational Therapy Early Bird Early years support in Ely good, caring and supportive

33. Parent carer participation network – feedback from Spring 2012 meetings One person, one point of contact (6) A lot more comments added to this from across all networks except Fenland. One name person in charge of case; one point of contact that we know about When name therapist is on annual leave / sick, how to get another professional to work on case Need a ‘good’ key worker ; one keyworker; Key worker Someone in special school to contact Best if they are ‘independent’

34. Parent carer participation network – feedback from Spring 2012 meetings Group working of specialists to look at the “problems” as a whole, rather than a piecemeal approach Joined up thinking by agencies/school etc Step care – get the support you need when/where you need, single point of access with local authority to CAMHS worker One building where all professionals are

35. Parent carer participation network – feedback from Spring 2012 meetings More use of Common Assessment Framework (CAF) in CAMHS Mechanism for getting IMMEDIATE support after diagnosis e.g. Health Visitor/Key Worker

36. Parent carer participation network – feedback from Spring 2012 meetings Quicker access to services – less time wasted (4) A number of comments were added to that at the from the Hunts and Fenland networks on how this could be achieved: Children sent back to specialist rather than seeing appropriate person. More outreach work – cut clinic waiting times Single point of access – appropriate for children and young people Difficulty getting appointments at CAMHS (Team around child) Easier for GPs to refer

37. Parent carer participation network – feedback from Spring 2012 meetings To be listened to (4) 7 new comments were added around this theme, most (5) came from the Cambridge City network. Listening to parents who know child best; Parent/carer knowledge of the child to be respected Parents to feedback not just through complaints Outcome measures being introduced so families will be asked views at end of every session Evaluation of current providers leading to further education of schools/institutes/hospitals

38. Parent carer participation network – feedback from Spring 2012 meetings Who holds school to account for delivery of speech and language therapy – shouldn’t be parents Proactively must ask for services i.e. therapies Parents have to push

39. Parent carer participation network – feedback from Spring 2012 meetings Independent information, including on our rights (1) – 2 comments were added at Cambridge City network about the lack of information on alternative treatment options Lack of treatment options Unwillingness to explore / evaluate alternative treatments / therapies

40. Parent carer participation network – feedback from Spring 2012 meetings Effective assessment process (4+7=11) This theme was picked up at the Cambridge City network where they talked about the need for a core offer and openness and transparency around what was actually available, through a single referral (CAF) and single plan…

41. Parent carer participation network – feedback from Spring 2012 meetings Single plan for each child – Health Action Plan (Cambridge City) ‘Shop front’ service only Core offer – health resources e.g. OT, SALT, nurse into schools and well-used; not in isolation, via CAF Openness and transparency Cross border issues are a nightmare

42. Parent carer participation network – feedback from Spring 2012 meetings Parents attending the Cambridge City also picked up on consistency issues: Consistency between workers so it is not dependent on which worker you get (2) Service depends on worker – some good, some less good (Cambridge City) GP commissioning – more consistency (Cambridge City)

43. Parent carer participation network – feedback from Spring 2012 meetings The East Cambs network picked up on 2 more of the original themes: Support when no diagnosis is found (1) What about those without a diagnosis of/or a unique disorder? Non-judgemental support with managing behaviour for parents, and behaviour training for teachers (3) Lack of support for violence in home against parents – someone to call; training early

44. Parent carer participation network – feedback from Spring 2012 meetings In Hunts, they picked up on the need for a more flexible range of services: Encouragement and access to information about doing things differently/in the way family feels is right Diagnosis seems rigid, other problems not taken into account Don’t put people (children) into “boxes” Some extra flexibility – but approved providers Information on alternative therapies to help support my child Won’t reassess conditions/diagnosis Flexible approach to age (child vs. adult) (Cambridge City)

45. Parent carer participation network – feedback from Spring 2012 meetings The South Cambs network had some very specific issues around consistency of support across the age range type of disability (mental health versus physical disabilities). Particular mention was made of speech and language support and the need to monitor schools on whether they are implementing SALT and OT advice. There were also comments about the lack of coordination of health appointments…

46. Parent carer participation network – feedback from Spring 2012 meetings Does level of support for a child change with age? i.e. early years versus school? Support seems to drop off with age Communication with school is important Speech and language important Schools need to be monitored on their implementation of SALT and OT advice, as they currently are not implementing a lot Support should be needs based not resource based Individual teacher needs to take advice on board (from support professionals) (Hunts) All services to have same transitions age (Hunts)

47. Parent carer participation network – feedback from Spring 2012 meetings Why is mental health more important than physical disabilities? Need more consistent level of support Medical vs. education statements Hard to get mental health issue recognised Inconsistency in support, between disabilities, across county i.e. wheelchair service

48. Parent carer participation network – feedback from Spring 2012 meetings Support needed if your child does not have a diagnosis Support early on, early intervention – child ‘not bad enough’ Leaving therapy until child is further behind, let’s see if he develops this first, when it is clear that he had not developed ‘normally’ for year, need to act now!

49. Parent carer participation network – feedback from Spring 2012 meetings Co-coordinating health appointments i.e. ENT (Ear, Nose and Throat) Educating staff to work together and cross-refer between services – a joined up service Addenbrooke’s CDC needs better paediatric specialist for Down’s Syndrome children Understaffing of orthotics clinic – need emergency facility Better coordinated appointments and referrals i.e. with hospitals, GP’s (Cambridge City)

50. Parent carer participation network – feedback from Spring 2012 meetings In Cambridge City, the theme of services needing to work together was mentioned: Joined up health and education Working with social care on learning disability Health and Well-Being Board – joined up working

51. Parent carer participation network – feedback from Spring 2012 meetings Cambridge City parents also made specific mention of the attitudes of staff: Attitude of staff Time to talk without child hearing Attitude training Partners in Policy Making course Respect for parents Positive images of disability, entitled to mainstream service

52. Parent carer participation network – feedback from Spring 2012 meetings Other comments and issues: Fenland Continence products – inappropriate products; buying own products. Self-directed support? CAMHS moving children into adult services too early Services [to] have same borders/access criteria. i.e. CAMHS and paediatricians Support for when parent/carer in hospital emergency and planned (need system that is clear) Special needs nurses for hospitalised children. Respite for parents.

53. Parent carer participation network – feedback from Spring 2012 meetings Other comments and issues: Hunts Access to OT/physio equipment via Disability Centres/trying equipment before buying Individual child should be seen as a whole person Children are children first. Even children are whole people not the labels. Parents – full-time job – but obstacles all the way

54. Parent carer participation network – feedback from Spring 2012 meetings Other comments and issues: Cambridge City Dedicated funding for sensory and motor skills Recognition that early appropriate intervention gives £ savings

55. Parent carer participation network – 2 key early intervention services In terms of planning early intervention services there appears to be 2 key types of support..

56. Parent carer participation network – 2 key early intervention services Understanding, supportive, knowledgeable and well-trained staff, who can provide: o Better signposting – easily accessible information on all support that is actually available to all the family including statutory/non statutory, locally and elsewhere o Information on and about the disability or condition o Honest and sensitive support at birth or point of diagnosis

57. Parent carer participation network – 2 key early intervention services Emotional support – a listening ear, someone for parents to talk to so they feel less isolated, including: o Access to ongoing support to help parents help their child o Access to support from other parents in a similar situation, including through groups for all families

58. Parent carer participation network – key messages for health services Generally speaking the health network meetings supported the key themes already identified, but the following types of support seem worth particular attention when planning health and mental health services…

59. Parent carer participation network – key messages for health services In relation to existing themes: Understanding, supportive, knowledgeable and well-trained staff Honest and sensitive support at birth of point of diagnosis One person, one point of contact

60. Parent carer participation network – key messages for health services Issues raised at the health meetings: Information on all options available, not just those funded by health, including alternative therapies Effective assessment process, including a core offer and openness and transparency around what is actually available

61. Parent carer participation network – key messages for health services The need to listen to parents about what is actually being delivered and to hold schools to account for delivery of speech and language therapy A more flexible range of services Improved consistency of services across the range of ages and types of disability (including where there is no diagnosis)

62. Parent carer participation network – key messages for health services Better coordination between health services Consistent cross-border services in Fenland Cambridge City network specifically picked up on the attitudes of staff, which may be worth exploring

63. Parent carer participation network – key messages for health services Next steps: Eva Alexandratou - action plan Feed back on the Summer 2012 education network meetings Autumn 2012 network meetings will focus on children’s disability services, including the new teams, short breaks and SDS The topic of our annual conference on 23 November will be accountability