NHS England and the UK government are being urged to reopen an influential speech and language therapy (SLT) service for people with language-led dementias which closed last year.
The Royal College of Speech and Language Therapists, Rare Dementia Support, and Dyscover have written an open letter to the government and NHS England calling for the urgent reinstatement of the National Hospital for Neurology and Neurosurgery’s SLT service.
Its closure meant the loss of the only national specialist SLT service for people with primary progressive aphasia (PPA) in England and Wales.
This, say experts, poses significant risks to those with a range of language-led dementias including being misdiagnosed, not receiving appropriate support, and having their human rights violated under the terms of the Mental Capacity Act 2005.
PPA describes a group of progressive neurological disorders starting with language difficulties.
These are types of dementia, associated with Alzheimer’s disease and frontotemporal dementia. There is currently no curative treatment for PPA, and the disease progresses over time.
SLT is the only available option for treatment and management of speech, language, and communication difficulties in PPA.
It is also key to making accurate diagnoses of these complex language-led dementias.
Funding an SLT service at the NHNN would enable accurate and timely diagnoses for people with PPA in England and Wales and, as a centre of clinical and research excellence, it would also provide essential support and interventions to help individuals and their family members live better, for longer.
In their letter, the Royal College of Speech and Language Therapists, Rare Dementia Support, and Dyscover write:
Fears for people with language-led dementias
We are writing to ask you to intervene to ensure the resumption of dedicated speech and language therapy services within the cognitive disorders clinic at the National Hospital for Neurology and Neurosurgery (NHNN).
As organisations representing people with Primary Progressive Aphasia (PPA) and the professionals who work with, and support, them and their families, we are very concerned about the loss of the only national specialist speech and language therapy service in England and Wales.
Given the rarity of these language-led dementias, we are particularly concerned about the significant risks people with them face if the only speech and language therapy service dedicated to supporting them is not restored as soon as possible.
These risks are detailed fully in the enclosed statement, but in summary, people face the risk of misdiagnosis. They face the risk of not receiving appropriate support, as do their families.
They face the risk of having their human rights violated under the terms of the Mental Capacity Act 2005.
Given the significance of these risks, we would welcome an early opportunity to discuss these issues with you so that a way can be found for the speech and language therapy service to be re-established.
We look forward to hearing from you and working with you to ensure the best possible level of diagnosis and support for people with language-led dementias and their families.
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