Integrated Commissioning Unit

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1 Contents 1. Purpose of the report p1. 2. Background p1. 3. Service User feedback p1. 4. Conclusion p6. 1. Purpose of the report Portsmouth City Council and Portsmouth Clinical Commissioning Group are working together to develop Autism diagnosis and support services in Portsmouth City. The report is about the views of people on the development of a diagnosis and support service. 2. Background The Autism Strategy has been developed in response to the Autism Act 2009 and the subsequent national strategy "Rewarding and Fulfilling Lives". As part of the consultation, a number of methods were used to gain the views of service users and carers. These included questionnaires (both online and handwritten) and visits to support groups between November and December Areas covered by the consultation included: Current Services Diagnosis Information Goals and Plans Support Families and Unpaid Carers Gaps 3. Service User Feedback The questions asked are shown below and include a summary of answers to each question and quotes taken directly from the surveys, which are written verbatim. Twenty Seven surveys were received in total, however not all questions were answered by everyone. The survey was completed by a mixture of parents and young people, 9 people chose to answer the age range and gender questions and these are shown in the table below: Age Range Number/Gender 2 male 0 2 female 3 female 2 female 1

2 Services What works well about the service you have at the moment? The current support groups are valued by those who currently attend. Having regular contact with other people affected by autism has proven really useful as well as the 1:1 support some families with young children have received for behavioural issues. Pirates is great! We use PASN's services a great deal.. it's really good to have this support and contact, and my son loves the PASN activities. My son attends the star light group and has greatly benefitted from this, he has also had 1:1 session's.. with what both he and us have learnt.we have been able to build on he has been able to put his new skills into practice at the youth club and we are seeing real improvements in his behaviour. " PASN's outreach officers have given me help and advice to help with my son's behaviour I also attend coffee mornings and events where I was able to meet with other parents and professionals leading me to feel less isolated and alone." What would you change about your current service? People are keen to increase the sort of support they get already. Increase the frequency of the groups as there is a waiting list. Attempt to get more activities or details of more activities going on around the city. I am not kept in the loop of my daughter's progress and feel I need more one to one help to show me how I can best improve her Maybe more activities that could include siblings It's a shame that they don't have more funding for the once a month Saturday clubs as it would be beneficial to have these groups at least twice a month but obviously due to money issues this can't happen Diagnosis How were you treated when you got a diagnosis, what was good and what didn't you like? Experience of the process on the day of diagnosis was generally good. People were disappointed with travelling, post diagnosis support and the length of waiting for diagnosis. During the wait families of younger children felt they had no support. It was ok, but could have been better. The autism provision in Portsmouth is poor. We were pretty much offered nothing and had to push to get CAMHS referral so as to continue our provision of medication. The service forgot to refer us, so we had to ask again. 2

3 It took a number of years to get his diagnosis but after an hour or so of spending time with the consultant he confirmed our son was indeed on the autistic spectrum so it was a huge relief to have that "proof" on paper...it was just the long drawn out process to get to that point that was difficult and at times frustrating!! I was treated fine but wished I didn't have to travel so far for assessment and diagnosis. I felt the process was far too lengthy, and the damage that was being done on a daily basis through a lack of understanding in their school placements was not taken into consideration. What was your experience of getting support after a diagnosis? Very few people said they had good support. Most people felt little had been done to support them post diagnosis. What support???? Started off good then slowly ran down to almost nothing. We felt that the professionals were slow to give us the information. The voluntary sector, particularly PASN, was invaluable in their input. Both times there has been no follow up for support, and I have only received support when I have sought it and chased it up myself. Information Where do you go now for information on autism? The majority of people used a mixture of internet and support groups. Portsmouth Autism support Network, or National Autistic Society website or from friends I now know. Websites, coffee morning where I get information from parent/carers, local events such as carer awareness day, consultation day, etc PACTN (Pirates are cooler than Ninjas) or internet What is the best way for you to access information? Most people prefer someone to help them in person to understand the information they can access. Some things online, however more personal issues feel they need to be dealt with face to face. I don't access any information provided by the local authority. Is there any? I use the internet. Internet as I don't like having to use the phone 3

4 What do you find difficult about accessing information? There is a mixture of too much or not enough information available. Knowing where to start looking in the first place I understand what I read or hear, it just does not sink in until umpteen reads or listening's. The information on internet can be overwhelming. What areas do you usually look for when you are looking for information on autism? People who answered tended to look for help in the areas they found particularly difficult to understand because of the autism. Goals and Plans The symptoms and people lives living with it. Peoples experience rather than "theory" Other people's experience see if similar traits/ behaviours and how dealt with. What has helped you the most to develop your own goals and achieve things that are important to you? People either tend to be self-motivated or had help at school. Others tend not to plan. CBT has helped in one case. Our own endeavour, never heard peer and mutual support network I would say 1-1 support from someone who had taken time to get to know them well. Mum and dad, starting to find a job Just never giving up, persevering in order to help our son. PASN support workers have been vital in helping us and once he had a diagnosis so were his then school What sort of things hold you back from making plans and goals? For families with young people it is about caring and effort. For adults the impact of autism makes planning difficult. Mostly finance, maybe also lack of confidence in others' understanding of my sons' needs. Knowing where to go to get the help from... Sometimes myself. Some could involve financial difficulties. Decision making, anxiety, unstable situation 4

5 Support What support has worked well to help you take part in the community and how did it work? Having a social group is a good springboard to wider community engagement. The youth club run by an outreach worker is amazing for our son The self-advocacy group has helped me over 9 years and to an extent the pirates group. Having support workers with the knowledge and understanding of autism has helped our son considerably. We also had the help of Connexion Service for the transition to college. They were an incredible help at a difficult and scary stage in our child's education. Enablebility- buddy and befriending- 3hrs support a week to take my son out to build his social skills What sort of support do you think you need to challenge services that are treating you unfairly? Most people identified individual advocacy as the support they would like in challenging services. An advocate would be invaluable for us. Having the information is one thing but not all parent/ carer are assertive enough to deal with unfair or unreasonable treatment. Asperger's/ Autism trained legal representation What has worked well for you when you have been trying to get work, or trying to do your job well? Most people were not looking; those that had jobs achieved this with the support of other agencies/staff paid to help them find work. Rob Thompson (LD Employment Service) helped me here. Hasn't started work yet but my son did try work experience but this didn't work at well because the employer couldn't offer my son enough support, so it was cut short. What has helped if you have had to deal with the police, or the probation service, or go to court? In relation to autism information for the police about the persons autism would have been helpful. Flexibility of approach, understanding of social communication disorders, e.g. not using ambiguous language or overloading with too much information at once. I used to have a window sticker for my car from Hampshire Autism Society that warned police that there was someone with autism in the car..i wish I had another one of those just in case I ever had to use it. Parental advice and support, NAS advice line, DWP advisor 5

6 Family and Unpaid Carers How well do you think family and unpaid carers are supported by the NHS and City Council? Most people felt they had no support from the city council and NHS. Engaging with services directly delivered by both was seen as difficult. Appallingly Everything seems to be such a battle and hard work even to be heard. I don't think family or people with autism are supported by the NHS at all. I think the council is putting a lot of work into trying to get it right, for example the 1:1 support provided by Enableability What sort of support do you think family and unpaid carers might need? Personalised breaks from caring and a support of people knowledgeable about autism. Someone to chat to about what sort of things to expect from your autistic child at different stages i.e. age related or peer related Gaps Training- social groups for support and support each other Their own source of support and guidance, and practical, applicable approach. Money, Days off, place for advice etc. Thinking about the service that is proposed, do you think there are any gaps? Most people felt there would be gaps. There should be the opportunity to plug these as things go along. Personal contact with the individuals and families concerned. There are just not enough opportunities for this Support groups for families and siblings. 4. Conclusion Housing not covered! The views expressed in this service development consultation have informed the tender for the diagnosis and support service. The way the service will work and the key activities service providers carry out reflect the information gained in this consultation. Bids to be offer a diagnosis and support service in Portsmouth will be evaluated with the results of this consultation in mind Thank you to all those people who took part in the consultation and gave up their time help develop better support for people in Portsmouth affected by Autism. 6

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