On 28th March ESPCF hosted two sessions for parent carers to meet with Natalie Kinsella and Melissa Baitmansour, participation workers from CAMHS (Child and Adolescent Mental Health Services), and share their experiences and ideas for improvement.
The CAMHS service carries out parts of the neurodevelopmental assessment service, such as ADHD assessments for children and young people under the age of 18, and autism assessments for over 11-year-olds, as well as mental health services. All parts of the CAMHS service were talked about in these sessions.
ESPCF regularly hears from families who tell us about their negative experiences with CAMHS and how difficult communication is with this service, so we are pleased to be part of this new participation work for parent carer involvement with the aim of bringing about positive change.
Awareness of the CAMHS participation team
An early message from parent carers was that few, if any, had any information or even awareness that a CAMHS participation team existed. In the past, families have been guided to make a complaint or contact PALS (Patient Advice and Liaison Service) with no mention of other feedback processes. Natalie and Melissa were able to reassure us they will be making sure this is remedied and are keen to hear from parent carers on how best to promote their work.
Feedback and ideas
There were good discussions at both the daytime and evening sessions. Here’s a summary of the main messages from parent carers to CAMHS:
- Keep families in the loop during the long CAMHS waiting period. We were told that all new referrals should be sent an initial letter that gives an indication of the expected waiting time. They should then be sent ‘keeping in touch’ letters sent every six months to let people know they are still on the waiting list, and to provide as much information as possible in regard to how long the wait is likely to be. It was noted that these letters also need to be provided to those already on waiting lists too.
- Idea for log-in system for families on the waiting list. A great suggestion was made for a log-in system for families on the waiting list so they can check their progress. Ideally this would allow them to see approximately where they are on the waiting list, as well as being able to view assessments that have been provided. Parent carers could be asked at the time of referral if they would like to use this system while retaining the ‘keeping in touch’ letters for those who would not want to use a log-in system.
- It was also suggested that this log-in system could be used to submit updated assessments or information as there will often be changes during a long waiting period.
- Transparency and openness. It was highlighted that expected waiting times can change, depending on various factors, such as staff long-term sickness, priority cases needing to be seen more urgently, recruitment – either difficulty in recruitment adding to waiting times, or potential additional money and successful recruitment which can shorten waiting times. The main message here is the importance of transparency. People want to be kept in the loop so they know what to expect, as this can affect things like the support that families need to seek in the meantime.
- Support while waiting. Parent carers spoke of the difficulty during these long waiting periods and of feeling left ‘to get on with it’. Greater information and signposting from CAMHS is urgently needed on other available resources and support services.
- Aftercare. Similarly, families would like improved communication in preparation for CAMHS support sessions ending; what happens after CAMHS; signposting to other services that offer aftercare is needed.
- A question arose about online assessments and how many children and young people are not able to engage in this system. If an online assessment is offered, a face-to-face assessment can be requested and although this may increase the wait, the requirement should be met.
- Inadequate number of sessions. It was highlighted that having a set number of sessions with a mental health clinician once you get to the top of the waiting list isn’t always enough. Families wanted the level of support and intervention to be more needs led, rather than a child being given a set number of sessions then discharged. For some children it can take several sessions to build up a trusting relationship with the clinician in the first place, and people then feel abandoned just as they were actually starting to get going.
- Private assessments. The main message here was inconsistency. Some families have private assessments accepted while others are refused, despite using reputable, suitably qualified professionals and adhering to the NICE (National Institute for Health and Care Excellence) guidelines. Natalie and Melissa will take this back to CAMHS and request they publish the precise criteria required for a private assessment to be accepted. ESPCF has raised this a number of times and will continue pushing for a more clear and consistent approach, including a statement from NHS services that supports families when schools, colleges, or local authority services question private/independent assessments and reports.
- Tangible change. There was a natural concern that the participation team would listen to parent carers but have little sway in persuading managers to make changes. We were reassured that there is senior management buy-in and a willingness to hear parent carer views and implement changes where possible, including those that may require trying to source additional funding.
These sessions are just the start of parent carer participation and there are a number of ways to be involved either on a regular or ad-hoc basis. We know that the CAMHS participation team are reviewing all the feedback which has been submitted, including on how an ongoing CAMHS parent carer group should work, for example in-person or online meetings, how often, and what sort of topics you would like to be covered. We’ll make sure we keep everyone updated as soon as we hear about future sessions or other opportunities to be involved. In the meantime, if you would like to share your views please get in touch: firstname.lastname@example.org or call 0300 770 1367.
The Sussex CAMHS website has a ‘get involved’ page which is undergoing a substantial overhaul to make it more user-friendly and to create useful signposting to resources. This is one of the areas where parent carer’s views are being sought.
Spread the word
As we mentioned at the beginning of this post, one of the major issues is that families are not aware of the participation team. Please do share this information with other families in East Sussex. There are details on the CAMHS get involved page, mentioned above, including the email address for the East Sussex participation manager, Natalie Kinsella: email@example.com
Thank you very much to everyone who came to the sessions and shared their experiences. It is so important that services hear from you directly about what you have gone through, or are continuing to go through. We are also very grateful to Natalie and Melissa from CAMHS for listening and committing to continuing these discussions to bring about change.