From an initiative by Plymouth Claimants Union.
Plymouth in UNISON have been asked to support this campaign that should hopefully have a positive effect for staff as well
Dear Devon Clinical Commissioning Group,
We are writing to you because we are concerned – both by the lack of provision of diagnostic services for adult autism and ADHD in Plymouth, and by the absence of communication or consultation on this matter. We request that you meet with us at your earliest convenience to discuss the concerns raised in this letter. Specifically, we are asking for:
1. A waiting time for assessments of adults with autism or ADHD of 2-3 months. Until that target is reached, patients should be given the option of referral to another service outside the area or through the patient choice scheme
2. Any diagnostic service for autism or ADHD should be provided by the NHS, NOT contracted out to Livewell Southwest or any other private company
3. For the NHS in Devon to commit to a strategy for raising awareness among medical professionals regarding:
3.i. The under-diagnosis of autism and ADHD in many sections of the population based on gender, class, race and ethnicity
3.ii. The less well-known presentations of autism and ADHD (for example, inattentive symptoms of ADHD)
3.iii. Common co-morbidities and how they may mask symptoms of autism and ADHD in patients (for example, how autism is often missed in patients with other disabilities, or how ADHD is extremely common in patients already diagnosed with Tourettes Syndrome)
We believe that anything less will in fact cost the NHS more money, and lead to discrimination against patients based on a number of characteristics protected under the equality act.
The knock-on effects of leaving autism and ADHD undiagnosed are well-established. Within the NHS, it will lead to increased pressure on A&E, increased needs for mental health services, and increased needs for addiction services. For ADHD in particular, simply providing people with the correct medication reduces the need for all three of the above. We are sure you will agree that given the need to reduce spending in Devon, prompt diagnosis and support for adults with autism and ADHD is essential.
In order to access reasonable adjustment at work and university, it is necessary to have a diagnosis. People are leaving employment, failing courses, and loosing relationships while waiting for an assessment. Without access to a timely assessment, adults with autism and ADHD are exposed to significant discrimination in work and education. We understand that in other parts of the UK, people are being assessed significantly faster – within just one month, in one area that we know of. We urge the CCG to consider the impact that long waiting times are having on us when planning any services in Plymouth.
Children belonging to groups protected under the equality act (particularly girls and BAME children), are less likely to have their symptoms of autism and ADHD noticed at an early age. As such, these groups are more likely to receive a late diagnosis in adulthood. Any barriers to accessing a diagnosis in adulthood are therefore having a disproportionate impact on these groups. Furthermore, we are aware that there is often a lack of awareness regarding how other disabilities may “mask” autism and ADHD, and a lack of awareness regarding common co-morbidities. This is likely leading to discrimination on the basis of disability. We believe it is vital that the CCG consider all of this in any equality impact assessment for a new service in Plymouth. We further believe that it is important to ensure all medical professionals in the area are fully aware of these issues when dealing with patients. We request that the CCG commit to a strategy for this.
We are extremely disappointed by the lack of communication regarding the suspension of diagnostic services in Plymouth. We understand that assessments for autism and ADHD have not taken place for quite some time. However, there have been no announcements regarding this. Nor has there been any public consultation regarding the establishment of a new service. Patients have been given contradictory and unclear information, left unsure as to whether they are on a waiting list or not. Several patients have been informed that their only option is to pay a private psychiatrist for an assessment. The CCG has consistently failed to respond to requests for more information. This is not solely the responsibility of the CCG but also a failure of the company Livewell Southwest, who we understand is contracted to provide services in Plymouth.
In order to rebuild trust it is vital that any service is as accountable to the public as possible, particularly because they will be treating vulnerable people who find access to complaint procedures more challenging. The Freedom of Information Act is one such avenue for accountability. However, as a private community interest company Livewell Southwest is not subject to the provisions of that Act. In order to protect vulnerable patients, and due to their recent failure to provide the services they are contracted to provide, we believe it would be wholly inappropriate for Livewell Southwest to provide diagnostic services in future. We request that instead, these services are provided directly by the NHS – either through the DAANA clinic, or a new service tailored to Plymouth.
Finally, we understand that it will take some time for a satisfactory service to be established in Plymouth. In the meantime, we request that the CCG make it easier to access other services – either by referral to NHS autism and ADHD services in other areas, or by private assessments via the patient choice scheme.
The Devon Assessment Campaign ( firstname.lastname@example.org )
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