Agenda for Scrutiny Panel on services for children with autism on Wednesday, 6th November, 2013, 1.00pm
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Agenda and draft minutes
PDF 178 KBVenue: Council Chamber, Hove Town Hall. View directions
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Minutes: There were no declarations of interest or apologies. There was no reason to exclude press and public. |
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Chair's Communications Minutes: Thank you all for attending and welcome to this fifth meeting of the Scrutiny Panel looking at services for children with autism. We are keen to hear your views and experiences and I will ask each of you to introduce yourself and talk for 10-15 minutes then the Panel will ask questions.
Please feel free to stay for the whole meeting, but do also feel free to leave after you have spoken.
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Minutes from the last meeting Draft minutes from 15 October 2013 meeting. |
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To hear from witnesses
Dr Becky Jarvis, GP
Sue White and Mary Porter, PRESENS
Alison Nuttall, Commissioner for CAMHS, B&HCC
Jenny Brickell, Head of the Integrated Child Development & Disability Service
Education
Amanda Meier, Lead Teacher, Phoenix Centre, Hove Park School
Cath OddHayward, Head of Swann Centre, BACA
Adrian Carver, Headteacher Downs View School and Downs View Link College
Additional documents: Minutes: DRAFT MINUTES
Dr Rebecca Jarvis GP (RJ)
Dr Jarvis is a GP in a large practice in Mid Brighton and has been a GP for 18 years. For the last two years she has been the clinical lead for Mental Health for the CCG (1 day a week). As part of that, she is on the Adult Strategy Group looking at the pathway for diagnosis of autism for adults. Historically, this has been through Professor Hugo Critchley’s assessment clinic which runs very thorough assessments but has a two year waiting list. Consequently, they have introduced a new pathway with specialist practitioners in Mental Health services who do assessments, diagnosis, and group therapy following NICE guidelines. They are also linked into Autism Sussex and Amaze. The autism pathway is set within the Mental Health service as the best place for it to be – although this is controversial.
The CCG are working to raise awareness of autism. They run protected learning scheme sessions 4-6 times a year (this is when GP practices are closed for half a day for training). One of these PLS sessions included a workshop on children with autism and looked at diagnosis and support. All practices also send a representative to a six weekly meeting of the Localities Amaze gave a presentation at one of these around access to General Practice for children with special needs including Autism. The CCG are trying to work with practices to improve access for parents.
There are currently two strategies (one for adults with autism and one for children) and it is very important to make sure these dovetail and there are no gaps or problems in transition. People over 18yrs old may benefit from services provided for children with autism and vice versa.
Around 1% of patients have autism (21 out of 2,306 patients aged under 16 in Dr Jarvis’s practice.) GPs are more aware now of autism than previously. The most common way for a child to receive a diagnosis of autism is via parental concern (rather than the GP spotting this during an appointment for something else). There is a clear pathway for diagnosis but it can take time. We need to look at better ways of supporting people through the pathway. There needs to be stronger links between GPs and schools and school nurses. The rise of Childrens’ Centres mean that traditional links with Health Visitors have been lost and the CCG are trying to help develop different ways of communicating to mitigate against this. In Dr Jarvis’s surgery they have one Health Visitor as a main point of contact who meets with the partners at the surgery monthly to discuss children at risk.
There are gaps in the links between GPs and the third sector. There are links with Assert, Amaze and Autism Sussex but it remains a challenge to keep aware of all the services available and who to signpost people to.
There is also a gap in the information given to parents. All GPs will have their favourite web links but across all the 48 GP surgeries in the city the provision of information is not uniform. The CCG are encouraging people to go and sit in on sessions in the specialist services such as Professor Critchely’s assessment centre. It is a challenge for GPs to keep up as there is so much training in many areas (autism training is just one area).
Q – Is there a plan to provide a consistent approach across all GP practices or a plan to have a lead person?
RJ – The CCG are looking at education and the protected learning schemes - how to make these more proficient and how to increase competencies for all staff, not just GPS. Part of the adults with autism strategy is around links between the CCG and education.
Q – Is there a clear pathway and is it a worry that there is not enough support with Health Visitors not linked in?
RJ –There is a very clear diagnostic pathway (through Sea Side View and CAMHS) but the role of the third sector is less clear. The issue with Health Visitors is the loss of ‘soft information’. There is good formal communication and there are link Health Visitors to keep this communication working. Dr Jarvis’s practice covers a number of Childrens Centres so they work with a link Health Visitor. Other GP practices are looking to do something similar.
Q – How do GPs work with Seaside View?
RJ – It is a formal letter writing process - the GP will write a letter and get a written reply. The GP will usually try and see the parents a few weeks later. It can take a few months as the process of diagnosis is complex and it is important to get it right. There is a lot of information that needs to be gathered.
Q – What about children who have autism but do not have Mental Health issues – where do they go?
RJ – Autism is a spectrum of severity so it can fall through a commissioning gap. Historically it was not ‘owned’ in either Mental Health services or Learning Disability services which is why autism in children needs its own strategy as there is the potential to fall through the gap.
Q – In an ideal world, what would you like to see?
RJ – More clarity and a holistic team around the child and their family. Further awareness of what is going on at school and links with the Health Visitor to create a holistic team that means that the GP doesn’t have to rely on hearing what is happening from the parents. In transition from children’s services to adult services there are different rules on confidentiality and support and different criteria.
Q – What is it realistic to ask GPs? Is it around computer records?
RJ – It is about computer records but also about having a feel for what is happening and knowing about meetings that take place. It is about consistent advice and support and being aware of what agencies can deliver what services so there are not unrealistic expectations but plenty of support.
Q – How do school nurses fit in?
RJ – The school nurses will contact GPs if they have serious concerns but there aren’t strong links there. It is a difficult issue as it is around communication. Confidentiality means that emails aren’t realistic – there are lower thresholds for writing letters. It is challenging. Perhaps one suggestion is for annual reviews for each child.
Q – How do the CCG reinforce best practice across surgeries in regard to training? How do you identify the worst performers?
RJ – As GPs we are getting much better on comparison data. You can directly compare in a way that wasn’t available before. They are getting better on identifying strengths and weaknesses. GPs are generalists so there are different levels of interest in particular areas. The Amaze review was very interesting and raised lots of questions. GPs are getting better at asking what we are doing well and less well either through patient participation panels or through Amaze. It is a challenge but one the CCG are aware of.
Q – GP monitoring is around what services GPs are paid for. Is there any systematic monitoring and should there be different ways of monitoring?
RJ – Patient satisfaction questionnaires are national and there is 5yr feedback from patients locally which provides information on a wide range of things. This information is broken down into sections – for example, age of patients – but not into groups of patients although this could be looked at in the future.
The Chair thanked Dr Jarvis for a most useful and informative session.
Sue White and Mary Porter, Pre School Special Needs Service (PRESENS)
Sue White (SW) has responsibility for children who come to the Jeanne Saunders Centre and Easthill Park House diagnostic centres.
Mary Porter (MP) has responsibility for the team supporting children in nursery settings from 0-5yrs. They also provide support for special needs training and run specific training sessions that are free to SENCOs. There are around 180-200 children on the caseload each year and a team of 9 teachers (6.5FTE) and 6 specialist nursery nurses (3.6FTE) and they work with 147 settings. They will do an observation of a child and determine if there should be a referral to PRESENS. The referral is sent to the Seaside View Referrals Panel which takes place every other Thursday. Then a professional will be allocated to each child. PRESENS also provide Home teach for children not in nursery. They work with children 2 years before Reception so between 2.5-5yrs old. Early childhood funding means that they can now take a child the term after they are 2yrs.
They will visit settings once a week or fortnightly to provide support in small groups or 1-2-1. Part of the role of the practitioners in these settings is to provide best practice. PRESENS will also liaise with parents. Each term they provide a detailed report. They also aim to support parents to find a nursery – they can’t recommend a nursery but they can ensure that the appropriate support is given.
Sue White – Some children need more intensive intervention so there are 18 places at Jeanne Saunders or East Hill. These will be children who have already been identified as having significant and complex needs. In May or June each year, the information about these children will go to a Panel to look at each child and see if they fit the criteria for Jeanne Saunders or East Hill. There is one year funding (pre-school) but this is continually reviewed as a child may not need a full year. Parents have the opportunity to visit the nurseries – there are differences (for example, there are lots of stairs in Jeanne Saunders so for some children East Hill is better). The Panel decides which children will benefit from the nurseries but it is up to parents to accept the place. There will be a handover process in liaison with the offsite team. The nurseries are open 2 days a week (Thursdays and Fridays) and they are open to children across the city so they have their own minibus with driver and escort.
Children are assessed termly and PRESENS also supports assessments required for a diagnosis of autism, working with Seaside View. They will work with the SEN team to see if a statutory assessment required and what support is needed. They work closely with parents with strategies, information sessions and coffee mornings. Some of the stage 2 assessments carried out by Seaside View will take place in the nurseries as it is a familiar setting for the child.
Q – Do PRESENS support children in Reception?
MP – Only transition support for the first term of Reception not throughout the Reception Year. They will discuss the needs of the child prior to starting school and provide a written transition report. There will be a maximum of 3 visits to the school and no direct intervention during these visits.
MP – Not training but support, advice, strategies. Although PRESENS do run training courses. When a child starts school, the ASCSS will take over.
Q – Do you get referrals from Seaside View?
MP – Most of the referrals come from nursery settings when PRESENS see the child, particularly concerning autism as a parent may not realise, and if Health Visitors are not involved, then it is at nursery when a practitioner will raise concerns. The nursery will contact PRESENS with their concerns and they will carry out an observation then ask for a referral. Health Visitors have to refer to Seaside View.
Q – Do you support all nurseries? Childminders?
MP – PRESENS supports all nurseries in the city – 147 which are a combination of private, voluntary and mainstream and they all have a named contact. They also support childminders. If a child is at home rather than nursery, PRESENS won’t know if a parent goes to a GP with concerns. Some children are referred by a Speech and Language Therapist if a parent had concerns about a child’s S&L. As children don’t have named Health Visitors, they often aren’t referred through this route.
Q – What are the main gaps and how do we plug them?
MP – One area is Health Visiting where it would be helpful if children could be picked up by Health Visitors and there are discussions around this. If a child goes to nursery early (working parents) then they are picked up but otherwise most children go to nursery when they are 3yrs old and the funding is available.
Q – Do you find that nursery staff are well enough informed to make referrals? Is there a need for more training?
MP – Since the area SENCO teams were set up by Government 12 years ago, PRESENS have been working with nurseries so there are lots of links. All nurseries know they can contact us and they are more aware of when there are concerns and a child is not meeting their milestones in EYFC. There is a lot of good knowledge around this. It is a challenge around levels of experience and qualifications but this is improving. More nurseries are employing teachers but there are a lot of staff with NVQs.
SW – Training is key. The presence of PRESENS in nurseries and the good relationship are important. Nurseries have continual staff turnover and the training modules are always full. They would like to be able to do more. The workforce is becoming more skilled in approaching parents.
Q – The Panel have heard that parents have felt they are sometimes perceived as ‘part of the problem’. The safe space you provide to allow assessments – could this be extended?
MP – There is a huge challenge when a paediatrician sees a child just with their parents or on their own. So now PRESENS are involved in the Stage 1 assessment to enable professionals to see the child in the social setting of nursery so this has improved. But yes, for a parent, a meeting at home or in a familiar setting might be a better option. Some paediatricians do this and it is very helpful.
Q – How many of your children have autism?
MP – There are 6 with a diagnosis out of 180 with 20 more on the pathway.
SW – At the two settings they had 2 children in September with a diagnosis, 2 more have since had a diagnosis, and 2 more have a stage 2 assessment booked and 3 more on the pathway to diagnosis. So 9 out of 18 (50%).
The Chair thanked Ms Porter and Ms White for a very helpful and interesting session.
Alison Nuttall, Commissioner of CAMHS, B&HCC[1]
Alison Nuttall (AN) is the commissioner for CAMHS. The commissioning arrangements are very complex. The Clinical Commissioning Group (CCG) has, via a Section 75 agreement, passed lead commissioning of children’s community health services to the council and the commissioner is AN. A range of services are commissioned: CAMHS at Tiers 1-3 including the learning disabilities team;
Community paediatrics, specialist school nursing and health visiting, audiology, speech and language therapy, physiotherapy, OT;
Disability residential and short breaks.
AN does not commission: in-patient mental health beds (NHS England specialist commissioning); health visiting that is not disabilities (NHS England area team); school nursing (Public Health team in B&HCC); acute hospital services (CCG); GPs (NHS England area team).
The funding for services commissioned by AN comes from the NHS and B&HCC. NHS commissioning is still evolving.
Services are commissioned from CAMHS which runs a tiered structure. AN leads on Tiers 1-3. CAMHS provides: Tier 1 - universal provision supported by specialists;
Some early intervention and prevention;
Tier 2 is provided by B&HCC by the Community CAMHS team and is a single unit with staff from a range of organisations. It is for children with mild to moderate emotional distress/mental health issues;
Support to children within Holmwood College (used to be ACE);
Tier 3 is provided by the Sussex Partnership Foundation Trust (SPFT) and is for children with more moderate to severe mental health issues. This is often what people think of when they say they went to CAMHS. It would be useful if they had separate names.
These services are commissioned as part of a big block of mental health contracts which includes adult mental health services.
Community health services are commissioned by AN as part of the block arrangement, including the health element of Seaside View (SSV). The community health services are predominately provided by Sussex Community Trust – the service is part of the Child Development and Disability service (situated at Seaside View). A psychology post at Seaside View is specifically commissioned outside the SPFT block contract. A psychologist and a nurse have been commissioned recently at the children’s hospital.
There is nothing that says a LA must commission an autism service – it is more about the breadth of the service. The diagnostic pathways within Seaside View and CAMHS are part of the commissioned services. There are children who may have identified needs so wouldn’t meet CAMHS criteria but need support. SPFT CAMHS is part of a very large mental health contract but there is no specific commissioned arrangement for autism. There is a newly commissioned role of neurodevelopmental psychology in Seaside View working with children and young people who have complex needs but who do not need to access specialist mental health services.
All services could work with children with autism if they accessed these children. The expectation is that all services can provide appropriately for children and young people with autism if they are in need of that provision. There are lots of access points for training. Services have developed internal specialists, for example, there is a specialist OT with an interest sensory development. There is not a range of autism services commissioned separately.
AN performance manages the ‘contracts’ not the people. It is a contractual arrangement and AN monitors the targets that the services have to meet. AN commissions the health components of SSV but it is operationally managed through B&HCC. Jenny Brickell manages this through the council structures.
Q – Does this complexity impact on parents and families?
AN – It shouldn’t impact on parents as long as the service is operating as it should. The service is designed and then contracted. Parents are involved in commissioning reviews, for example, the commissioning review on disability services was done strategically with parents and others. There are commissioning cycles so that one thing is not constantly being commissioned. AN listens to parents and if there is a question around how resources are allocated, then she will listen and find out what is needed. If the issue raised is operational, then it needs to go to the relevant service.
Going forward, ASC is a theme of the SEN strategy. AN has developed, and is consulting on, a draft ASC plan to sit within the SEN strategy. This is intended to be multi-agency and acknowledge the gaps that are known about and seek to address them where possible. There are links with the Adults with Autism Strategy and AN sits on the adult ASC group. There needs to be a ‘bridging document’ between the two strategies. The Adults with Autism Strategy is required nationally, but a plan is needed locally for children with autism. B&HCC are looking at a bridging document around transition. The draft ASC plan will have an action plan and it will take account of the recommendations of the Scrutiny Panel. AN is the convenor of the plan and will look after it – but not deliver it.
There is joint work underway looking at residential capacity around behaviour (not child protection issues but young people who cannot live at home). Young people with ASC and moderate/severe learning difficulties make up a number of these young people. Some people are placed too far away from the city so services are looking at the capacity to keep children in the city.
The issue of support at home has been identified and AN is looking at joining resources to establish a more seamless service, including support for behavioural issues for children with ASC at home and elsewhere where their needs do not fit the criteria for CAMHS.
Better use of the JSNA is required. There is a section on adults with autism but AN has asked whether it can cover all ages.
User feedback needs to be embedded more in the commissioning arrangements. This is difficult because services are part of a big block contract therefore only so much can be changed. How do services who are not ASC-specific work with children with ASC? AN is thinking of asking services to detail what training is ASC specific and in what areas.
Q – How do you determine what the Key Performance Indicators (KPIs) are in the contracts?
AN- It is part of a huge contract that SPFT delivers for mental health services across the whole of Sussex. The KPIs are set at a very remote level of the contract. AN has asked to input but it is hard. They are generally around procedural areas, for example, waiting times, re-referral times, number of under-18s in mental health beds. KPIs that have consequences are high level. At a lower level, AN will talk to the service provider. For example, if a GP raises an issue with AN she will forward it on to CAMHS to problem-solve at a local level.
Q – Can you look at local service level agreements with providers?
AN – There are agreements but they don’t have the weight of a contractual agreement. For example, SPFT has no way of recording a looked-after child on their database. There is not an expectation that the data set includes that. They are working on the database but this is more done on an informal level. AN will talk to CAMHS about serious issues if she feels that there is a problem with service levels.
Q – How public are the metrics used to monitor the contracts and how much is this driven – and understood – by families?
AN – The CAMHS Partnership Board has parents and Amaze on it and issues are flagged with the Board. The Disability Partnership Board also has cross-over issues. AN talks to the MindMeUp group and is on a number of Partnership Boards. CAMHS does not have a specific parents group. There isn’t a public set of metrics but there is open dialogue and AN is often a middle-broker to try and make improvements.
Q – Would a better input into the KPIs help?
AN – Not necessarily. They are about organisational issues around access not outcomes. These contract negotiations are done elsewhere – the children’s commissioned services are a very small part of the mental health service. One view is that CAMHS money should be taken out of the block contract, but the corporate costs may mean this wouldn’t work well. On the other hand, the contract could be steered in a different way.
AN has a good working relationship with CAMHS across the continuum. If someone waits longer than 4 weeks for a first appointment, CAMHS is fined so they meet this target 100%. However, this is not the best way of doing things as it can prevent more detailed information-gathering so there are issues around managing the service in this way.
There is a distinction between commissioning which is ongoing and contracting which comes to an end. The contract is issued with SPFT then AN works with them to see that the service is as good as it can be. In its broadest sense, it is the whole pathway from tiers 1-4 and in some areas someone else does the buying and AN does the commissioning. It is all about using resources efficiently. In CAMHS they have to deliver an autism-specific pathway within a large block of mental health services.
Q – What was the issue with the earlier survey?
AN – The issue at the time was a data issue. At that point in time, there was not a database of all children with ASC. Compass has ASC as part of a diagnosis and the ASCSS has some date but there was not one single database. So the decision was taken to survey those on the ASC pathway as there was no way of knowing otherwise that they would reach families with an autism diagnosis.
A postcard survey is continually undertaken but it is not autism specific so it only gives a certain amount of the picture. The rest comes from listening to families. Also, those who get a good service don’t always say so.
Q – It is possible to work on a feedback process that is transparent, comprehensive and has a box to tick on autism to get a comprehensive view?
AN – There is no reason why not, but it would need a number of other tick boxes too and would need to be carefully designed. With careful design and handling it could be a interesting and valid exercise.
The Chair thanked Alison Nuttal for a most interesting and informative session.
Additional information supplied after the meeting:
“I realise I didn't make the following clear;
I meet with CAMHS tier 2 and 3 together formally on a quarterly basis to look at performance. We discuss referral numbers and patterns, LAC, A&E presentations with self harm, significant/complex complaints, SUIs, service pressures, areas of development, user feedback (both surveys and softer intelligence)
CAMHS is not an ASC specific service. Children and young people with ASC don't need or meet criteria for CAMHS unless they have a mental health issue. It may be that this needs greater explanation
I would echo the comments Jenny made about the need for support for families where neither CAMHS nor specialist disability is involved and this is in part addressed by the family support worker in the ASCSS, the specialist EP and the new psychology post at Seaside View. We need to be clearer about the ASC offer and ensure families are clear about what is and isn't available from who and why.
I would be grateful if this could be shared with the panel/added to the notes.”
Draft minutes – Jenny Brickell, Head of the Integrated Child Development & Disability Service (JB)
JB - The philosophy is to provide a joined-up approach across health, social care and education. There is a joint referral system. Children are screened and then a decision is taken on what approach is required. The approach is multi-disciplinary and may involve different professionals such as OTs or paediatricians. The assessments are organised and the treatments agreed by both health and social care. There are strong links with PRESENS and the special schools. There are three members of a specialist health visitor nursing team who are involved in assessments from an early stage. The school nurses attached to the special schools work with children with autism and a range of other conditions. There is specialist social work team who work with those with more complex disabilities. There are 2 people who provide counselling services and a volunteer who also works with parent carers.
The specialist CAMHS learning disabilities team comprises a range of practitioners, all of whom are working to capacity and there are issues in terms of waiting lists.
The health OT team works with children directly and in schools. The social care side of OT works with families in the home, for example, if a property needs adaptations. There is also a team of psychologists and paediatricians.
In addition to contractual performance indicators, JB is working on how managers manage performance. She meets with other managers to identify key performance measures and to look at what needs to be monitored across the multi-disciplinary pathway. The ASC pathway is included in this to look at any areas of concern. In terms of operational management, families wait a long time for Stage 2 assessments. These are multi-disciplinary and there is a capacity issue around services. They know this isn’t as good as they would like it to be and trying to improve.
Post-diagnostic support is an area of concern. The support services in the city are robust for the severe end of the spectrum – Drove Road and Tudor House have support services to maximise independence and support parent carers. The gap is at the moderate end of the spectrum where there is a huge impact on people’s lives. Within Seaside View (SSV) all parents are offered a TimeOut course post-diagnosis but there is often a lack of concrete practical help for children and their families.
An autism working group has been recently set up as a result of the new NICE guidelines. This was set up to look specifically at autism following lobbying by parents and in recognition of this gap. The Early Help Strategy has just been launched and the working group will link into this. The plan is to have multi-agency sign up to look at the gaps and they are aware that post-diagnostic support is a current gaps.
Q – Is there a gap in the support for families of children with medium severity autism?
JB – It is not necessarily ‘medium’ as children may be high functioning . It is the children who don’t hit the CAHMS criteria to access the specialist social work service (Tudor House) but need help to function. It may not be appropriate for them to access, for example, overnight stays at the Drove Road but they still need to access support. In an ideal world, ... view the full minutes text for item 33. |
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Any other Business Minutes: There was no other business. |