Frequently asked questions about our waiting times
We are unable to give accurate waiting times and we prioritise people according to clinical need and risk. This may mean people have to wait to be seen because of the level of need our services are experiencing. It is important that we are honest about this.
We would like you to know that all of the team feels worried about how long people have to wait to have such an important assessment. We talk regularly to the people who commission our service and explain why we urgently need more resources.
We are a very small team but all of us are committed, professionally and personally, to the recognition and inclusion of the neurodivergent community. We know that an appropriate explanation can make real difference to that person's life.
If you are worried about your mental health whilst waiting, please contact your lead practitioner (if you are open to mental health services), or your GP or the Sussex Mental Health Line (if more urgent) on 0300 5000 101. Making sure your mental health needs are met, as much as possible, can really help while you are waiting for your assessment.
Please let us know if you change your contact details.
Please attend your assessment or let us know as soon as you can if you cannot make an assessment. People not attending an assessment has a significant impact upon our capacity to see people.
There are a number of reasons why you are having to wait for such a long time. The situation is complex but here are some of those reasons:
- Professionals are also recognising that there are many more neurodivergent people than were previously understood which means referrals are greater than ever before
- Processing so many referrals actually impacts upon our available clinical time
- We are a very small team covering a large geographical area. We are having lots of conversations with commissioners and other bodies to explain why we need more funding and why neurodevelopmental assessment and support for neurodivergent people is so important. We do not currently have enough staff to cover any sickness or other unexpected changes.
- We want to ensure that people receive a correct and comprehensive assessment that is of a high standard. We would also like people to feel they have the opportunity to say what they need to say and that we agree the right explanation (diagnosis) together, using the right information. Completing an assessment can take a lot of time and thought. Feedback from service users has confirmed that not feeling rushed is very helpful and validating.
- We now understand that the neurodivergent population is much more diverse than we previously understood (for example, we see lots of people from different gender identities - sadly this wasn’t always the case within neurodevelopmental services - and from lots of different backgrounds and heritages).
- We are also therefore seeing lots of people who have different levels of need. We do understand that everyone has a valid reason for seeking assessment. Sometimes we have had to prioritise seeing people because of their level of need or situation. We make the decision to prioritise an assessment based on lots of information and after careful consideration.
- People's needs are complex and sometimes we have to see them more times or ask them to see other professionals so we are confident that we are completing the best assessment we possibly can, that will be most useful to them in the future.
- Covid-19 has had some impact on waiting times but the team continued to complete assessments throughout the pandemic. However, assessments did take longer due to Covid-19 restrictions and because people's mental health needs (understandably) increased. We also offered additional support to neurodivergent people to help keep them out of hospital during the crisis (although this is not something that we are funded to do).
- Other services are becoming more aware of the needs of neurodivergent people and that they need to understand more about the neurodivergent population. We have been trying to offer some advice and training to other professionals so that health and social care is accessible and useful to neurodivergent people. There is a really big need for wider understanding and we do not have enough resources to really support the positive change we know neurodivergent people deserve to see but we try to contribute where we can. We know, without this input, services will not be meaningful for the neurodivergent community. It is important that training is co-produced with neurodivergent people and this rightly takes time and thought.
We are having lots of conversations with commissioners and other bodies to explain why we need more funding and why assessment and support for neurodivergent people is so important.
We want to provide timely assessments and we are genuinely looking forward to meeting you when we are in a position to do so.
It is important for us to reiterate that by being on our waiting list, there is already enough evidence for you to be considered eligible for assessment (although obviously we cannot confirm diagnosis either way at this point). We would really appreciate it if employers / educational providers and services are sensitive to this and are open to the consideration of reasonable adjustments in anticipation of a future specialist assessment.
We have discussed the situation in detail with the Patient Advice and Liaison Service (PALS). You can send comments to them at pals@spft.nhs.uk. To be clear, contacting PALS will not be able to change the time you have to wait, and they will not be able to provide you with any more information on waiting times. This does not alter your right to have your complaint heard, though.
A healthcare professional can request that your referral is expedited if there is significant new information in support of your referral. That professional can request a description of the sort of information we need via: ESNDS@spft.nhs.uk
We cannot honour all requests to expedite a referral.
If, after you have been assessed by us, you have had a private assessment for ADHD and received a diagnosis, it is extremely frustrating to find out that you cannot quickly see an NHS professional and start medication. We understand that you probably feel disappointed and anxious because you cannot access or continue medication. We are truly sorry that you are likely to have a very long wait before you can be seen in our service to either start, review or change your medication. The information below explains the situation in more detail.
Why can't my GP start my medication?
The decision that a specialist health professional must start and remain involved in the diagnosis and treatment of ADHD was made at a national level. This is not something we can change locally. We have to follow the advice of health organisations like NICE.
You can read more about NICE guidance for ADHD here: Recommendations for Attention deficit hyperactivity disorder: diagnosis and management
Once treatment has been started, people with ADHD must be regularly reviewed by a specialist health professional and also a GP. This is called a Shared Care Agreement, which again, is something that happens nationally. Most GPs do not enter into a shared care agreement with private providers and there may be ongoing cost implications for the person with ADHD if they do.
We are talking to services about how we might best manage our shared care agreements so that we can see more people, but at the moment, GPs expect people to be reviewed within an ADHD or mental health service in order to continue issuing prescriptions.
Why can't you just prescribe me medication? My assessment was thorough
The quality of private ADHD assessments vary, but we know that a lot of private providers offer high-quality, robust assessments.
It is our professional responsibility to review the decision of any other health professional to be sure we are satisfied that treatment for ADHD is appropriate and likely to be helpful.
We also need to assess for any risks and physical health problems so we will need to meet with you before we can issue a prescription and start titration. This will be an opportunity for us to answer any questions you may have about ADHD, possible treatment, and to offer you information about other helpful ways of supporting symptom control.
Why is there such a long wait for this appointment?
You are probably aware that we get far more referrals than we are able to assess and treat. This may be why you decided to seek a private assessment.
One of the biggest obstacles to our capacity is that we have to continue to review people once they are prescribed ADHD medication. That means that our caseloads have become full.
This is frustrating as we can't see new people who need our help as we only have enough resources to review people already on ADHD medication.
What if you don't agree with the private diagnosis?
If we feel that ADHD is not the best explanation for your experiences, we will explain this to you and you can ask us any questions that you have. If we think there are other reasons for your symptoms, we will agree what should happen next and help you access any other services.
That being said, as a service, we know that ADHD is a common difference, experienced by many people and you should not be concerned that we will not believe you or understand the challenges that you have.
We understand that ADHD can be a very helpful diagnosis and that treatment is important.
What are you doing about this situation?
We are keen to deliver the most effective service that supports people with ADHD in a positive and inclusive way. We use feedback and service evaluation to increase our efficiency as much as possible.
However, our service is significantly under resourced compared to the ever-growing demand for access to support. We engage with commissioners and partners and use all opportunities to explain the importance of accessible and timely assessment and treatment for ADHD for adults living in Sussex.
What can I do because I am unhappy?
The number of enquiries we get from people worried about the waiting list significantly impacts upon our ability to see patients. We have had to decide therefore that we cannot respond to individuals on the waiting list. This is explained in more detail in your waiting list letter which gives details of PALS (Patient Advice and Liaison Service).
We would like to take this opportunity to again apologise for your disappointment and validate your frustration. We very much look forward to meeting you when capacity allows.