A Parent’s Experience of Commissioning Services Graham Manfield

My experience Involvement of families and professionals Children’s Hearing Services Working Groups (CHSWGs) What went wrong? How was it put right? Lessons learned Key points I live in Bexley and my daughter attends a secondary school with a deaf support centre in Bromley.

Health Services in Bexley What went wrong? Lack of information CHSWG had not been considered Parent Voice – family involvement Attitude towards involvement Summer 2014 NHS Bexley CCG and LB Bexley began to consider an integrated pathway for C&YP services using a prime contractor model including services used by deaf CYP such as audiology, SLT and CAMHS. The project aims included: “putting children and families at the heart of  what happens“ “right message to the right people at the right time” “a consistent and transparent approach to communication and engagement” I was a parent representative on the local CHSWG at that time but I only heard about this by chance in September. It had not been raised for discussion. CHSWGs Involves parents of deaf children, as well as any other service users and professionals who provide services for deaf children, such as teachers of the deaf, audiologists, and speech and language therapists. CHSWGs should ensure that services for deaf children and their families work together to provide the best support possible. DoH Guidance CHSWGs seek to empower all families of deaf children and deaf young people to be involved with the common cause and focus on how to improve all those involved in delivering services deaf children and their families. A key role of CHSWGs is to ensure that children's hearing services are high in the agenda of those responsible for comissioning and delivering services, and resourcing at a strategic level. It should offer advice, guidance and where necessary exert influence to ensure high quality services are available. Family Friendly Principles and Partnership Working It is important and mutuainclude service-users, including parents and carers of deaf children and seek the views of young deaf service users, in the planning and development of serviceslly beneficial to. The involvement of service-users can be invaluable in terms of suggesting what is good about local service delivery and areas that could be further improved. CoP 1.12 Make use of existing groups 3.18 LAs and CCGs engage with groups representing CYP with SEN and other voluntary organisations and community groups. The commissioner told me that there had been extensive consultation including views from a “very well represented group to ensure we meet the diverse needs of the population”. I was not confident that services for deaf children had been fully considered and there was a significant risk that their needs would not be met. I asked her to confirm that this were included in the represented group. I also asked about input from professionals working with deaf children. Could have been raised at CHSWG at an early stage of the process which would have helped to ensure an integrated approach. “the voice of deaf children has been heard and all views considered and where recommendations are achievable and within scope assessed against the Bexley population needs have been included.” The groups consulted included Bexley Voice, a parent forum of which I am a member. Project manager had met the committee but had subsequently not engaged with them and no consultation had happened. “where our presence at a voluntary sector briefing ticks their consulting box - in my view if they have consulted with Bexley Voice - that means we have communicated with our members and reported back and I can assure you that this has not happened.” The Chair of the CHSWG and I met with the commissioner. I discovered that only one family of a deaf child had been involved in the initial consultation. Agreed a way forward and to follow the NDCS advice to commissioners including the use of the CHSWG to consult with deaf children and their families. Advice to LA Commissioners on meeting the needs of CYP with sensory impairments in implementing SEND reform (NDCS, blind children UK, RNIB, Sense) NDCS advice to local authorities on the local offer I was taken about to receive a reply from the commissioner “As there are going to be no changes to the budget or the services for deaf children I have been advised by the Director of Commissioning that we do not have a duty to consult individual groups.” Changes from 2001 CoP There is a clearer focus on the participation of children and young people and parents in decision-making at individual and strategic levels The principles in practice Participating in decision making 1.3 Local authorities must ensure that children, their parents and young people are involved in discussions and decisions about their individual support and about local provision. Specifically, local authorities must • consult children with SEN or disabilities, and their parents and young people with SEN or disabilities when reviewing local SEN and social care provision (Chapter 4) • consult them in developing and reviewing their Local Offer (Chapter 4) Involving children, young people and parents in planning, commissioning and reviewing services 1.11 Local authorities must consult children with SEN or disabilities, their parents, and young people with SEN or disabilities in reviewing educational and training provision and social care provision and in preparing and reviewing the Local Offer. It is important that they participate effectively in decisions about support available to them in their local area. Chapters 3 and 4 provide guidance on these duties. 1.12 Effective participation should lead to a better fit between families’ needs and the services provided, higher satisfaction with services, reduced costs (as long-term benefits emerge) and better value for money. Local authorities should work with children, young people and parents to establish the aims of their participation, mark progress and build trust. They should make use of existing organisations and forums which represent the views of parents – and those which represent the views of children and young people directly – and where these do not exist, local authorities should consider establishing them. 3.18 At a strategic level, partners must engage children and young people with SEN and disabilities and children’s parents in commissioning decisions, to give useful insights into how to improve services and outcomes. Local authorities, CCGs and NHS England must develop effective ways of harnessing the views of their local communities so that commissioning decisions on services for those with SEN and disabilities are shaped by users’ experiences, ambitions and expectations. To do this, local authorities and CCGs should engage with local Healthwatch organisations, patient representative groups, Parent Carer Forums, groups representing young people with SEN and disabilities and other local voluntary organisations and community groups. 3.29 Local authorities must review their provision, taking into consideration the experiences of children, young people and families (including through representative groups such as Parent Carer Forums), voluntary and community sector providers and local Healthwatch. Information from such reviews will contribute to future arrangements and the effectiveness of local joint working. 4.13 Effective parent participation can led to a better fit between families’ needs and services, higher satisfaction, reduced costs (long term benefits, better VFM and better relationships between those providing services and those using them. Local authorities and parents should work together to establish the aims of parent participation, to mark progress and build trust. 4.32 Local Offer includes arrangements for consulting with parents and YP with SEN. 8.1 Local authorities must place children, young people and families at the centre of their planning, and work with them to develop co-ordinated approaches to securing better outcomes, as should clinical commissioning groups (CCGs).

Health Services in Bexley How was it put right? Consultation exercise Changes to tertiary audiology 2015 Involvement of CHSWG Engagement event Survey Information Support from the NDCS Project will follow the NDCS advice to commissioners which includes the use of the CHSWG. Attendence at CHSWG, information in advance including a briefing for CHSWG members and information and questions intended for deaf children and young people and their families identify if there are other ways to incorporate the views of deaf children and their families. The commissioner met ToD and agreed to conduct a specific consultation exercise for deaf children and their families. In the event this never took place as the project was terminated in Jan 2015.  In the summer of 2014 NHS Bexley CCG and London Borough of Bexley commenced work to consider how services for children and young people could be transformed and improved by delivering a comprehensive range of services through one main integrated pathway. The aim was to develop a model tailored to prevent escalation of health, educational and social problems and the associated poor outcomes’ as well as improve early identification and intervention, using a prime contractor model of contracting.    It has not been possible at this stage to identify an organisation to fulfil this prime contractor role. However, we will be working together throughout January, to apply our learning and use it as an opportunity to test an alternative commissioning model to achieve the improved services models with integrated outcomes, which we have agreed. We remain committed to ensuring that Bexley children and young people gain the maximum benefits from this innovative work.   We look forward to engaging with partners and service user representatives to discuss an alternative commissioning model in the very near future. In early 2015 changes were proposed to tertiary audiology services in South East London. The changes were to take place by the summer so this raised concerns about how services would continue in the interim and the standard and availability of services in the future. On this occasion the CHSWG and the NDCS were involved at an early stage of the process. An engagement event for parents/carers was arranged and a survey created for families to share their views. Information for families was discussed at the CHSWG and the NDCS shared this to members and offered support through their helpline. Feedback received from parents about the transition process was almost wholly positive.

Education Services in Bromley What went wrong? Lack of information CHSWG had not been considered Family involvement Impact on the process In September 2013 my daughter transferred to a secondary school in Bromley which has a support centre for deaf children. Shortly afterwards I became aware that work on a market testing exercise for educational services had begun some months earlier. Professionals working with deaf children had not been asked to contribute to the proposal or consulted. Even though providing information to parents formed part of this work there had been no communication with families living in Bromley or from other boroughs. They were understandably concerned about the impact on their deaf children’s education.   An education committee meeting where this issue was discussed was well attended by families and other interested organisations including Nicola Ward representing the NDCS; in fact so many attended that it was switched to the main council chamber to accommodate everyone. Emotions were running high and the meeting did little to reassure parents that they and their children were involved in the process or address their concerns. There were a large number of parents, professionals and supporters of deaf children at an executive committee meeting a few weeks later. With the help of the NDCS several parents asked questions which reflected the lack of information that had been provided to them. The proposal was voted through so the council proceeded to market testing which included full consultation.

Education Services in Bromley How was it put right? Key messages agreed Involvement of CHSWG Information sharing Engagement event Referral panel Support from the NDCS Nicola Ward arranged a meeting for parents to make them aware of the potential changes and gather their views. As a result some key messages were agreed setting out parents’ concerns reflecting the lack of information and contact about the proposals. They wanted the process to be transparent and for the council to involve them and professionals working with deaf children to ensure decisions were based on accurate information and an understanding about the specialist nature of much of the help deaf children need to succeed in their education   In February 2014 the NDCS met with the commissioner for the market testing process and the Assistant Director of Education to share these key messages. They agreed to arrange a meeting where parents could ask questions about the process and to discuss the best way for engagement around developing the service specification. In March 2014 I joined the Bromley CHSWG as Chair and invited the commissioner to attend meetings so that the issues could be discussed with parents, professionals and other interested organisations and to help provide information to families. Over the following months we discussed how information would be provided to families and how they would be involved in the process. This included a specific page on the council’s website, a dedicated email address, letters and briefings. Opportunities for engagement. Referral panel would be established to discuss specific options and to consider the impact and implications of proposals affecting deaf children. This panel would include representatives from the hearing impairment services, parents and pupils. In the event the process was discontinued in autumn 2015. We agreed a communication to families and a commitment from the council that the CHSWG and families would be informed if further proposals were developed.

Lessons Learned Plans to work with families should have been effectively translated into action. Problems and conflict could have been avoided if families were involved from an early stage. The use of CHSWGs would have made engagement and coordination easier. Help from interested organisations should have been considered. Changes from 2001 CoP There is a clearer focus on the participation of children and young people and parents in decision-making at individual and strategic levels The principles in practice Participating in decision making 1.3 Local authorities must ensure that children, their parents and young people are involved in discussions and decisions about their individual support and about local provision. Specifically, local authorities must • consult children with SEN or disabilities, and their parents and young people with SEN or disabilities when reviewing local SEN and social care provision (Chapter 4) • consult them in developing and reviewing their Local Offer (Chapter 4) Involving children, young people and parents in planning, commissioning and reviewing services 1.11 Local authorities must consult children with SEN or disabilities, their parents, and young people with SEN or disabilities in reviewing educational and training provision and social care provision and in preparing and reviewing the Local Offer. It is important that they participate effectively in decisions about support available to them in their local area. Chapters 3 and 4 provide guidance on these duties. 1.12 Effective participation should lead to a better fit between families’ needs and the services provided, higher satisfaction with services, reduced costs (as long-term benefits emerge) and better value for money. Local authorities should work with children, young people and parents to establish the aims of their participation, mark progress and build trust. They should make use of existing organisations and forums which represent the views of parents – and those which represent the views of children and young people directly – and where these do not exist, local authorities should consider establishing them. 3.18 At a strategic level, partners must engage children and young people with SEN and disabilities and children’s parents in commissioning decisions, to give useful insights into how to improve services and outcomes. Local authorities, CCGs and NHS England must develop effective ways of harnessing the views of their local communities so that commissioning decisions on services for those with SEN and disabilities are shaped by users’ experiences, ambitions and expectations. To do this, local authorities and CCGs should engage with local Healthwatch organisations, patient representative groups, Parent Carer Forums, groups representing young people with SEN and disabilities and other local voluntary organisations and community groups. 3.29 Local authorities must review their provision, taking into consideration the experiences of children, young people and families (including through representative groups such as Parent Carer Forums), voluntary and community sector providers and local Healthwatch. Information from such reviews will contribute to future arrangements and the effectiveness of local joint working. 4.13 Effective parent participation can led to a better fit between families’ needs and services, higher satisfaction, reduced costs (long term benefits, better VFM and better relationships between those providing services and those using them. Local authorities and parents should work together to establish the aims of parent participation, to mark progress and build trust. 4.32 Local Offer includes arrangements for consulting with parents and YP with SEN. 8.1 Local authorities must place children, young people and families at the centre of their planning, and work with them to develop co-ordinated approaches to securing better outcomes, as should clinical commissioning groups (CCGs).

Key points Involvement of families is essential to match services with need. Information should be given as early as possible. Parent views: How informed/involved? Invitation Appointments Local parent groups NDCS Use CHSWGs Parents comments It seems odd to set strategic direction without understanding the needs of the end user. Crucial to ensure services match the needs of service users. It is fundamental to hear the voice of the service user. Parents are the best at knowing which parts of the service are working well and which parts might not be and can be improved on. I don’t think that parents’ needs are always well understood. There is far too much discussion without consultations with parents. I cannot stress enough how important it is for Commissioners to show parents they are listening to constructive comments and suggestions.  

Key points Range of opportunities to gather views and involve families is important: Feedback form after visits (tablet?) Parents’ meetings with professionals Surveys – paper or online? Mobile phone – survey/app Webinar (Ofsted/CQC) Parents: The time given was very rushed and lack of interest.

Key points Parents informed of decisions and outcomes and what will happen next. Parent views of decisions and outputs Vague, unclear Not linked to strategic change Awareness rather than driving change and measuring effectiveness Not informed Parents are in most cases are left in the dark with nowhere to turn. Creating leaflets setting out strategic direction alone does not deliver change. I felt included but I do not believe it led to any change. It is great to be given an opportunity to provide feedback but it would have been better to know this was taken into consideration and what was done to improve the services. Outputs were not clear enough and not linked well enough to strategic change. Meetings and listening were good. But their outputs were not clear enough and not linked well enough to strategic change. Asking for parents opinions can become a box ticking exercise rather than setting the direction for strategic planning and driving change. Really this research should inform strategic direction with very clear new objectives set that are then measured over time.  

Thank you Graham Manfield