Paper Two

Health Services for Children with Complex Needs

in Aberdeen and Surrounding Area

Report of Formal Consultation

June – September 2010

September 2010

Executive Summary

Background

In June 2010, NHS Grampian Board approved the launch of a formal consultation on plans to make changes to health services for children with complex needs in Aberdeen and surrounding area.This followed an Option Appraisal process involving parents and staff.

Process

The formal consultation, which ran from June to September 2010, was carried out in line with national guidance. A consultation paper outlining the proposed model was widely distributed to parents, staff and other interested parties. Respondents were able to use a range of ways to give their views including a feedback questionnaire and meetings for parents/carers and for staff.

Responses

85 people completed a feedback questionnaire but, in total, approximately 150 people gave their views (in writing and verbally). Overall, there was a fairly even split between parents/public and staff taking part in the consultation.

Views

The statistics below are the results from the 85 completed questionnaires:

  • 59% completely supported and 41% partly supported the proposed model as a whole.
  • When asked for their views on which model best meets the needs of all children - 59% thought the proposed model, 29% were unsure and 13% thought the current model.
  • 8 out of 13 individual elements of the proposed model received complete support from over 80% of respondents and 3 from over 60% of respondents.
  • 22% completely supported; 36% partly supported; 37% did not support and 4% were unsure about the proposal to no longer have the Raeden Centre.

The themes below are the main ones arising from all the comments received during the consultation:

  • There was broad support for the ethos behind the proposed model –partnership working, inclusion, equity and a seamless service.
  • Views were polarised over the proposals for services for children aged 0-5.
  • Clarification was requested and some concerns raised about how the model would be implemented, particularly given the current financial climate. Specific concerns were raised around staffing, roll-out to Aberdeenshire and plans for transition.
  • Respondents took the opportunity to give their views on the parts of the model which Aberdeen City Council has responsibility for – education and social care and family support. There was a lot of support for the proposed Specialist Provision and processes around social care but there were concerns around nursery places and limited resources.

Conclusion

  • There is a high level of support for the proposed model overall and the ethos behind the model.
  • There are a number of areas of concern that need to be considered and others that require clarification and further discussion.
  • The Board will need to consider the results of the formal consultation when making its decision about the future of health services for children with complex needs.
  • If the Board approve the proposed model, parents/carers, staff and partner organisations will need to continue to be fully informed and involved to ensure successful implementation.

Introduction

In June 2010, NHS Grampian Board approved the launch of a formal consultation on plans to make changes to health services for children with complex needs in Aberdeen and surrounding area. The proposed model was developed following the instruction from the Board to carry out an Option Appraisal on the future of services for this group of children.The Option Appraisal was an inclusive process involving parents and staff.

Throughout the process, NHS Grampian has ensured an ongoing dialogue with the Scottish Health Council (SHC), an independent organisation with a role to assess how well the NHS is involving the public. The SHC approved the way parents and carers were involved in developing the proposed model and has provided advice on the formal consultation process.

The formal consultation, which ranfrom 9 June until 3 September 2010, was carried out in line with the national guidance: CEL 4 (2010) -Informing, Engaging and Consulting People in Developing Health and Community Care Services.

The national guidance states that a formal consultation is only necessary in cases of “major service change”. However, the Option Appraisal Steering Group felt that, due to the importance of the issue, even if the proposed model was not viewed as major service change, it would still carry out a formal consultation. In August 2010, NHS Grampian received feedback from Scottish Government officials which agreed with the local assessment (by the Board and SHC) that “this does not constitute a major service change, with an important factor being that the proposed service appears to be an enhancement to what is currently provided”.

2. Formal Consultation Process

A consultation paper was produced which outlined:

  • The background to the plans
  • A summary of the proposed model (See Appendix A)
  • The main differences between the current service and the proposed model
  • A detailed description of the three main parts of the proposed model (health, education, social care and family support)
  • A list of the values which parents and staff agreed should be used as the foundation of the service, however it is provided.
  • A list of agreed benefits that parents and staff used to score the range of ways (options) that services could be provided.

The consultation paper and feedback questionnairewere distributed widely (hard copy and electronically) to relevant stakeholders including parents/carers (via schools, the Raeden Centre and NHS clinics), staff, community groups, support groups, voluntary sector organisations, NHS public forums, MP/MSPs and local councillors. It was also sent to a variety of venues used by the public such as libraries and community centres. People could respond by completing the questionnaire online or returning in the Freepost envelope provided or by emailing or writing in with comments.

Two open sessions were held for parents and carers (morning and evening sessions after school holidays) to find out about the plans and to have the chance to ask questions. The opportunity to invite a member of NHS staff to attend an existing group was also available.A Voxur unit (laptop video booth) was sited at the VSA Carers Centre for anyone who wanted to record their views by audio or video.

Two media releases were issued to raise awareness of the consultation - at the time of the launch and before the open meetings.

  1. Number and Method of Response

In total, approximately 150 people gave their views. It is difficult to give an exact number because some responses were submitted on behalf of a group of staff and someof the parents who attended the open sessions also submitted an individual written response. People chose a variety of ways to give their views and this is broken down below:

  • 85 questionnaires were returned (30 online and 55 by post).
  • 8 separate responses were submitted by email (individual and group).
  • 22 parents/ carers attended the 2 open sessions.
  • Discussion atmeetings of 7 existing groups or forums:parents from the Ellon area; Grampian Area Partnership Forum; Raeden Centre staff; Clinical Genetics Team; Inverurie Child Development Team; Children with Disability Sub-Group of Aberdeenshire Children’s Services Planning Group; the Third Sector in Aberdeen. Meetings included Steering Group attendance if requested and where available.
  • No-one used the Voxur unit to give their views.
  1. Respondent Profile

When considering all responses (written and verbal), there was a fairly even split between staff and parent/public responses. Again, due to the variety of ways that people gave their views and option to do so anonymously, it is difficult to beexact.

Of the 85 questionnaire respondents who specified, 57% (n=41) were parents/ carers; 21% (n=15) were members of staff; 15% (n=11) belonged to a community or voluntary organisation and 7% (n=5) were members of the public.

  1. Views

The statistics beloware taken from the 85 questionnaire responses, whilst the commentary is based on all responses to the consultation.

5.1 Awareness of plans

Respondents were asked if they knew that there were plans to make changes to health services for children with complex needs - before reading the consultation paper. 51% (n=43) said that they did know about the plans but 49% (n=41) said that they did not. Awareness levels amongst parents/carers was slightly higher at 56%.

5.2 Understanding of plans

Respondents were asked if the consultation paper helped them understand the plans. 26% (n=21) said “yes, completely”, 73% (n=58) said “yes, partly” and only one person said “no, not at all”. It is likely that there are 2 main reasons for this partial understanding: the current and proposed models are necessarily complex because of the multi-agency and multi-professional input required by many of the children and, secondly, some of the detail of the proposed new model has yet to be finalised and would form part of the implementation process.

The staff at Raeden included in their feedback the view that the paper’s description of current services at Raeden included a couple of inaccuracies. We apologise for these inaccuracies but do not believe this significantly alters the difference between the current service and the proposed model.

5.3 Level of support for the overall proposed model

When asked for their views about the proposed model as a whole (health, education, social care and family support), 59% (n=41) said they “completely support” the new model; 41% (n=28) said they “partly support” it and no-one said they “do not support” the new model. Complete support for the new model was slightly higher amongst parents/carers at 67%.

5.4 Meeting the needs of all children with complex needs

Respondents were asked for their views on which model of care would best meet the needs of all children with complex needs in Aberdeen and surrounding area. 59% (n=41) said the proposed model, 29% (n=20) said they were unsure and only 13% (n=9) thought the current service model would best meet the needs of all children with complex needs. Parents/carers who responded, expressed more uncertainty about which service model would be best, with 39% saying they were unsure. The request for clarification around some parts of the proposed model by parents/carers at the open meetings may explain some of this uncertainty.

5.5 Views on the details of the plans (health)

Respondents were asked for their level of support for 13 specific elements of the health section of the proposed model. The results from the questionnaire indicate a high level of support for nearly all health related aspects of the proposed model - 8 elements received complete support from over 80% of respondents and 3 elements receivedcomplete support from over 60% of respondents.

Two elements received relatively less support: support for the proposed locations for the Multi-Disciplinary Health Team (MDHT) bases/ seeing children in a range of settings ranged from 47% complete support, 39% partial support and 5% not in support; andsupport for no longer having Raeden ranged from 22% complete support, 36% partial support and 37% not in support. The following table provides the breakdown of responses:

Element of Model / Completely Support / Partly Support / Do Not Support / Don’t Know
The NHS will work in close partnership with education and social care services. / 93% (70) / 5% (4) / 0% (0) / 1% (1)
The service will be provided to children aged 0-18. / 91% (69) / 8% (6) / 0% (0) / 1% (1)
The service will include all children with complex needs including Autistic Spectrum and Developmental Co-ordination disorders. / 85% (63) / 12% (9) / 0% (0) / 3% (2)
There will be a resource centre based at the Specialist Provision. / 88% (66) / 8% (6) / 1% (1) / 3% (2)
There will be 3 Multi-Disciplinary Health Teams. / 61% (46) / 32% (24) / 3% (2) / 4% (3)
The proposed staffing of the MDHTs. / 67% (49) / 25% (18) / 4% (3) / 4% (3)
Team bases -BucksburnAcademy, MileEndSchool the Specialist Provision, but will see children in a wide range of settings. / 47% (35) / 39% (29) / 5% (4) / 8% (6)
The day nursery at Raeden will no longer be available & children will be assessed treated in other locations e.g. home, school. / 22% (17) / 36% (27) / 37% (28) / 5% (4)
Additional therapy & psychology staff will be appointed. / 88% (65) / 8% (6) / 0% (0) / 4% (3)
An information centre will be available at the Specialist Provision. / 81% (60) / 14% (10) / 1% (1) / 4% (3)
The service will use the Care Aims approach. / 81% (58) / 10% (7) / 4% (3) / 5% (4)
A Keyworker model will be adopted. / 67% (49) / 29% (21) / 1% (1) / 3% (2)
The service will be equal across Aberdeen & Aberdeenshire. / 85% (64) / 8% (6) / 0% (0) / 7% (5)

Although the quantitative resultsabove demonstrate support for the proposed model, the analysis of the qualitative responses and the discussion at the open meetings must also be considered. The level and breadth of detail received was considerable and it should be noted that the rest of this report only summarises the main themes, usingillustrative quotes from parents/carers and staff.

5.5.1Ethos of Model

There was broadsupport for the values and benefits underpinning the proposed model, particularly around the aims for inclusion, equity and a seamless service for children aged from 0-18. The plans to work in partnership with Aberdeen City Council were welcomed with some parents/carers commenting that currently thisoften does not happen.

“Our groups agree with the proposed model and feel it will provide more equitable provision and support across all age groups unlike the present model.”

“I agree with continuity of care and support to children and families at times of transition as this can be a very difficult period for families.”

“Pleased to see the criteria for accepting children is going to be more flexible and the two therapies criteria relaxed. Delighted that Autistic Spectrum Disorder now included in the service.”

However, parents at anopen meeting did raise a concern about the values in the consultation paper, commenting that they “don’t seem real”and that they were not sure they would be delivered in practice, illustrating some scepticism and possible lack of trust in the NHS.

5.5.2 Specific Elements of Model

Respondents commented onmany of the individual aspects of the proposed model with a diverse range of views expressed, particularly around the proposed changes to the services currently provided at Raeden - assessment, nursery provision and therapy and treatment. Together, with comments on other aspects, the main themes are below:

a) Location of assessment, care and treatment

Strongly held views were expressed about the proposal to no longer have the Raeden Centre, with many expressing opposition whilst others saw change as desirable. Some of the staff and parents against the proposal said that, as well as valuing the individual aspects of the current service, the real strength of Raeden is thefeeling of community that exists within“a culture of acceptance and openness” andwith a network of support available to families,which they felt could not be replicated in the proposed model.

In opposition:

“The week long assessment [at Raeden] is the best way for a child to be assessed, we worry that this [proposed] method may take longer and, not having all specialists on one site at all times during assessment, things may be missed.”

“The day nursery at Raeden for 0-3 is a fantastic resource that will be lost. The children are supported in one place with all their therapies. It enables children with complex needs to interact with the [other] children which they would not normally experience....the facility also acts as a review and proper modifier with parents discussing progress with the staff from week to week and monitoring conditions and development.”

“The service and support we have received through assessment, day nursery and nursery at Raeden has been excellent. I really hate to think where we would be without it. The loss of these services to me feels a BIG LOSS; I do appreciate there needs to be improvement for [aged] 5-18 services, but at this price?”

“We [as Raeden staff] wish to state formally that we feel the proposed model will reduce the quality of service provided, will inevitably lead to increased costs for NHS Grampian and establish a system which will be less efficient, less effective and less economic than the system currently in place.”

“The benefit of forming inter-family relationships at an early stage in your disabled child’s life cannot be understated or undervalued. Diluting a community such as that which exists at Raeden would be a real loss for future families facing this dramatic change in their circumstances.”

In support:

“At the time of the inception of the service,[Raeden] represented the best thinking and practice. Since then there have been very significant changes in society’s approach to special needs and major developments in health care and partnership working (with other agencies and, most importantly, with parents and families). I view the proposed new services as responding very positively to current concepts in healthcare and am entirely supportive of the proposals.”