The Health and Social Care Act 2012 introduced significant amendments to the NHS Act 2006. This guidance supports two legal duties, requiring clinical commissioning groups and commissioners in NHS England to enable:

• patients and carers to participate in planning, managing and making decisions about their care and treatment through the services they commission;
• the effective participation of the public in the commissioning process itself, so that services reflect the needs of local people.

In September 2013, NHS England published ‘Transforming Participation in Health and Care’ with the aim of supporting commissioners to improve individual and public participation and to better understand and respond to the needs of the communities they serve.

This document outlined 12 principles of participation, which are identified below:

The principles of participation should not be limited to the commissioners of services, but should also apply to those delivering services to children and families.

Through engagement with service users, carers and the public, services have the opportunity to listen, understand and respond to service user needs, perceptions and expectations. This ensures public and patient experiences and preferences are used to inform continuous improvement and transform healthcare.

In relation to the HCP parent participation should be seen as a partnership process where parents are valued members of a team shaping and delivering services for families.

Its purpose should be to assist parents to become involved in service planning and decision making so that services meet the needs of families and resources are not wasted on services which parents and families do not take up.

Truly effective parent participation occurs when parents have conversations with and work alongside professionals, in order to design, develop and improve services. There are three essential ingredients for successful parent participation:

• open and transparent information
• honest consultation
• effective participation

As parent participation develops, all three elements should be present and complement each other. The relationship between parents and professionals should also move towards working together as equal partners.

As identified in the outcomes section above, The Strategic Network for Child Health and Wellbeing in the East of England had previously worked with families to identify the key principles that should underpin the commissioning and delivery of services for children and young people (appendix 2).

In addition, during this project information and views from parents identified a number of key themes related to the delivery of the HCP and potential recommendations. Whilst both commissioners and providers will need to validate these themes within their own area they should form part of a comprehensive system wide implementation plan for the local HCP. The key themes were:

1. Inconsistency in Signposting
   “Professionals need to be well-informed and able to signpost”
   There is a perception that individual professionals are not consistently aware of the range of services and/or support available from organisations or services other than the one within which they work. This lack of readily available information has the potential to add additional stress to families and increase the time required for them to receive appropriate support.
   
   Recommendation: The development of an integrated HCP should ensure that all involved in the delivery of services have a clear understanding of the wide range of support that is available from partner organisations.
   
2. Lack of clarity about the system
   “Unclear how ‘system’ works, parent has to search or ask”
   This theme is closely linked to the theme identified above. Whilst families understand that the ‘system’ is complex they do not feel enough is done to provide users with this type of information. The information that is available is often only service specific and more general cross organisation information would make life easier when they required support or advice.
   
   Recommendation: Services should work together to provide information for families that describes the whole range of support that can be accessed via the HCP.
   
3. Communication
   “Professionals to listen and hear messages – parent as expert”
   It was felt that in some cases staff engaged with families did not take reasonable account of the families views when making decisions that related to one or more of their children. Parents were left feeling that their ‘expert’ knowledge of the child was ignored, leading to a feeling of frustration.
   
   Recommendation: All organisations should work to ensure that a culture of true partnership and respect exists amongst its staff when working with families.
   
   
4. Consistency of provision
   “Shouldn’t be luck of the draw”
   Clear examples exist of inconsistency in the provision and availability of services across a single geographical area. From the families perspective there does not appear to be any logical reason as to why this inconsistency exists, leaving families feeling deprived of support that others can access readily.
   
   Recommendation: All local systems should ensure that the range of services is consistently available to families within their area. In circumstances where this is not economically viable (specialist services) then clear provision should be made for how families access this support.
   
   
5. Co-ordination of services & Information
   “People don’t appear to know what others are doing”
   In circumstance where families were engaging with more than one service/profession there was a sense that the individual professionals were not generally aware of what the other was doing. This was particularly prevalent in relation to the sharing of information, resulting in families having to repeat/provide the same information on numerous occasions. In the worst case scenario families were being provided with multiple home visits/ appointments, from different professionals, within similar timeframes.
   
   Recommendation: In delivering the integrated HCP particular attention needs to be given to the mechanisms by which professional co-ordinate the delivery of care/support to families and the sharing of information.
   
   
6. Consistency of information
   “You get conflicting information from different sources”
   Numerous examples exist of situations where different professionals/services engaging with a family are providing conflicting advice regarding a particular issue/problem. As a result families can be left feeling more confused and concerned about the correct course of action they should be taking.
   
   Recommendation: Service providers should ensure that they have agreed the type of advice they will provide for the most common issues/problems presented by families. This advice should then be consistently given by all staff.
   
   
7. Timely support
   “There are times when you need a bit more support”
   In relation to the pathways, families were concerned that standardising how and what services are delivered will prevent the flexibility to respond to need as and when they occurred. Some of the key times identified when families may need additional support were:
   1. antenatal and birth period;
   2. at assessment “when you know your child is different”
   3. on the diagnosis of a particular problem/condition – parent or child;
   4. before a crisis rather than during it – waiting times often limit timely access.
      
      Recommendation: When implementing the pathways, services should ensure that there is sufficient flexibility to respond to the immediate needs of the family. In addition sufficient information on how to access services should be routinely provided to families so that they can request additional support as early as possible.