Agenda item

A briefing document is provided. NHS colleagues will provide a presentation on the bladder service. This includes services for adults and the new children and young people bladder service. Members of the Children and Young People Overview and Scrutiny Committee have been invited to attend the meeting for this item.

Members of the Children and Young People (C&YP) Overview and Scrutiny Committee had been invited to attend the meeting for this item. A briefing document had been circulated with the document pack which informed on bowel and bladder services for children and young people in Warwickshire. This included context that 6.4% of C&YP were affected by continence problems. An outline of the guidance was provided, together with the transfer of commissioning responsibilities to Public Health and the challenges experienced. Historically, different continence services were provided in Coventry and Warwickshire. Feedback from Warwickshire parents and carers showed the impact of a lack of continence services.

The Coventry and Warwickshire Integrated Care Board (C&W ICB) had considered a business case from South Warwickshire Foundation Trust (SWFT). The briefing outlined the development of a new bladder and bowel service. The lead provider for the interim two-year service would be  Coventry and Warwickshire Partnership Trust (CWPT), working in partnership with SWFT, to deliver the following:

•        Fully scope the needs of the population for a tiered approach using existing capacity.

•        Consider opportunities for efficiency of working across the footprint.

•        Co-produce a new set of clinical pathways with the parent carer forums across each area of clinical need.

•        Define a set of outcome measures.

•        Review the services following the two-year period to identify and outline the ongoing business case to the ICB.

The briefing reported on the recruitment activity, development of clinical pathways, and the initial priority was for those with the highest clinical need. The new service would be rolled out from May. Details were provided of the interim support available, through school nursing, primary care, and charitable groups. Free on-line training would be available for service providers from April. There would be evaluation throughout this two-year pilot, before further decisions were made about the sustainability and future delivery of the service.

A presentation was provided by Jamie Soden of the C&W ICB, supported by Amanda Parsons and Lindsey Sandler of CWPT to highlight key aspects and respond to questions. The presentation covered:

•        Adult Service Structure

•        Access and Purpose

•        Context

•        Current Provision

•        The ‘Set up’ Phase

•        The Service

•        Next Steps

Questions and comments were invited with responses provided as indicated:

•        The Chair referred to timescales asking about support for children who were in mainstream rather than specialist schools. She asked about securing funding to ensure the continuation of services and to avoid gaps in service in the future.

•        Jamie Soden responded on the funding aspect, explaining how this pilot would look at scoping and then development progression and agreement of the business case.

•        Amanda Parsons confirmed the new service would be open to referrals from 1^st May including for children not in special schools. She outlined the preparatory work to build staff capacity with recruitment of specialist nurses. As capacity was built, services would be available for children who had received tier one interventions (through health visiting and school nurses). It was known that there were 345 children in special schools and close working was taking place with school nurses. The Chair appreciated this response, referring to the feedback received from parents including the significant costs being incurred.

•        A member expected there would be a waiting list to meet the service demand. She asked what the estimated waiting time would be for the first appointment and also sought more information on the referral process.

•        Jamie Soden confirmed there were some existing services, but this would be a specialist service. The scoping aspect of the pilot would assist in determining the level of need. Amanda Parsons confirmed that all children should have a three-month intervention at tier one before referral to the specialist service. Where the tier one interventions were not working, the projected pathway was referrals to the specialist service would take place within two months and a six-week waiting time for appointments, subject to building capacity within the team. Lindsey Sandler spoke of the online training for nurseries, school nurses and health visitors providing tier one services. There had been a good response to the training offer. The intention was not just to provide a specialist service, but also to support services in contact with children and families most often. The level of demand was currently unknown. Further points were the parallel running with the training, the referral service for those needing more support and the prioritised approach.

•        It was questioned if the team was consultant-led due to the potentially complex issues faced. The service was led by specialist nurses, but there had been consultant input from community paediatricians. The clinical pathways were being developed based on best practice and some children may require referral to a paediatrician.

•        It was confirmed that Child and Adolescent Mental Health Services (CAMHS) were part of the stakeholder group involved in the development of this service. There was recognition of the needs for children with conditions including ADHD and Autism where specialist support from CAMHS may help that child to become continent.

•        The referral pathway was a via professionals. Children would have received tier one support so the referral would not necessarily be via a GP.

•        A councillor referred to non-medical aspects such as delayed toilet training. The scope of this pilot should take account of parent/carer social needs too. This was one of the many areas which concerned children where joint consideration with this committee was needed, to include the aspects for parents/carers. It was asked how this would be taken forward by the committees.

•        Amanda Parsons outlined the holistic and thorough assessment of each child with the initial appointments scheduled for 90 minutes. This aimed to explore all aspects which may be contributing to the child’s incontinence. The service was still in development with ongoing recruitment but was hoped that parental support and education would feature. It was known that there were wider support needs which may need referral to other services.

•        Lindsey Sandler added that a health and wellbeing questionnaire would be developed for use in the first meeting with the child and their family to assess the impact of continence or bladder/bowel issues on the child. Continence was not just a medical issue and there was a need to understand such things as anxiety levels, ability to attend school and impacts for the family. This would inform the future business case too and would be developed during the first year of the pilot.  

•        The Chair asked if the scoping document could be shared with the committee. It was currently in progress but could be shared at an appropriate point. The Chair asked for a briefing document and considered that the Committee could be an advocate for the service.

•        In response to questions from Councillor Humphreys, a discussion about estimating the level of demand for this service. Lindsey Sandler explained that the Coventry service had been established for a number of years and provided one information source. Others included the school nursing data on known continence issues where the individual required additional support. An area for further research was the health data held by the six special schools in Warwickshire, not previously available to the NHS. There was some further information needed on children with high level needs and those who may not be able to manage their continence through a behavioural programme. Councillor Humphreys agreed the aim was to educate, to help children achieve continence and independence, speaking also of the challenges she had seen when working with families. There was a need to complete the assessments, to help every child and she requested interim updates on how this project was progressing.

•        In terms of the on-line training offer for tier one providers, there was no limit on capacity for this training. Extensive engagement activity had taken place to encourage attendance by health, education, social care and CAMHS services amongst others. It was requested that feedback be provided on the people attending this training, to show the services represented and from which area of the County.

•        The Chair asked if interim progress reports could be provided.

•        The Portfolio Holder was aware of data from primary schools showing an increasing number of children wearing nappies at school. She asked if there was data to suggest that delays in toilet training may lead to longer-term continence issues. If this was the case, communications activity for parents should be undertaken. Amanda Parsons responded that this would be an area for health visitors as part of the tier one interventions and would rest with Public Health. Councillor Bell would pursue this accordingly.

•        The Chair noted from the briefing that 6% of children may not be continent and to provide a baseline she asked how many Warwickshire children were incontinent. She also asked if the data included children with stomas. This was an area where the team wanted to build capacity. Currently many children were supported via tertiary centres like Birmingham Children’s Hospital colorectal service. Once the service understood the position and the areas of greatest need to achieve equity across the C&W area this would be an aspiration for the future to move from hospital to community-based services.

•        Where a child had special educational needs, support may continue until they were 19. There would be a detailed assessment to see if each child could achieve continence. For those who could not, specialists would help to determine the best solutions and products for that individual to help them manage their incontinence.

•        A councillor highlighted sections from the presentation slides, to seek more information about the proposed reviews of this pilot scheme. He sought clarity about the funding provision, and the future service delivery model.

•        Jamie Soden outlined the business case submission and the rapid review process undertaken to assess the need for a service. This led to the ICB establishing this two-year project. The two years would give a full understanding of the services needed in Warwickshire. In terms of funding, it was a set amount, based on the staffing requirement and ancillary costs. Additionally, there was funding for products which was a best estimate and there may be a requirement for additional resourcing for products. Looking to the future, the aim was to scope need. In year two of the project a business case showing this need would be prepared for the ICB together with the services required. There were already some services within Warwickshire with Jamie referring to the tier one services and GP referral route to a paediatrician. These services would be taken into consideration to provide an integrated, multi-tier pathway.

•        The Councillor was concerned at the potential for projects to be underfunded, or to have their funding reduced. This was a two-year project, which was still gathering data and such data gathering may itself be problematic. Having some flexibility in the funding, for example if additional research was needed, would have been helpful.

•        Jamie Soden responded that the ICB was committed to this work and to assess the needs of C&YP in Warwickshire. It was committed to the scoping, the development of the business case for the future service and ensuring the correct clinical services were established during the first two years.

•        Lindsey Sandler added that the recruitments were to a permanent team, not for a one or two-year fixed term contract, with the expectation that a permanent service would be established. The data gathering would influence what the service would look like after the two years of this project. The Chair commented that this gave comfort and she appreciated the honesty of the answers provided.

•        A further data source to model the demand levels would be the CAMHS service. The member asked if the new bladder and bowel service would take on the support role for this cohort or whether there would be a joint approach.

•        Amanda Parsons responded that there had been a proactive approach engaging CAMHS colleagues as part of the tier one training. The CAMHS colleagues were the trusted professional for many service users. The aim was to provide CAMHS staff with a more specialist understanding of bowel and bladder issues and the support they could provide at tier one, then referring to tier two the children needing more specialist services.

•        It was questionable if the CAMHS patient records would include continence information, but this would be researched. Clinicians raised frequently their concerns about the data which needed to be collected. 

•        Councillor Bell asked that when the periodic briefings were provided, that they include the ‘health’ of the tier one services. It was understood that school nursing and health visiting services were both stretched. The Chair agreed, understanding the pressures that health visitors faced, requiring a prioritised approach to be taken.

•        Chris Bain of Healthwatch was pleased with this long-awaited report and the commitment that it would be a permanent service. He was a little concerned at the need for ongoing research and for this information to be brought together. He made a plea that a mechanism for patient and public involvement be provided for the development of this service and for a move towards co-production. Healthwatch would be keen to see that happen and to be kept informed, particularly as there were cultural dimensions to take into consideration.

•        Jamie Soden acknowledged the importance of engaging with the individual child or young person and their family. Not only would that be done through the assessments, but also the development of the service as a whole. Throughout this process, more pockets of information would be found. There was a commitment to make this a holistic approach.

•        The Chair requested a further update to the Committee or briefing in six months’ time. She noted the points from Healthwatch about coproduction, similarly offering the councillors’ help as many received feedback from the public.

The Chair thanked the presenters for this useful item and for the honest answers to members’ questions. Jamie Soden undertook to provide an update in six months. The Committee noted the update on continence services.