MENTAL HEALTH
condition. Julie moved into supported living with Affinity Trust aſter it became impossible for her to continue living at home because of overcrowding. When her mother passed away from Alzheimer’s, it became necessary for Julie to move out and into a shared bungalow.
JULIE’S STORY Julie is bubbly and energetic with an infectious love of people.
She has a diagnosis of Down’s syndrome with associated learning disability and while able to verbalise her wishes, she struggles to understand and engage in conversations that are not around her immediate interests and will oſten dissociate during these situations. She can also take time to process information, and oſten relies on staff noticing health concerns as she does not like to tell people when she is unwell.
As we got to know Julie it became quite apparent that, although bubbly and presenting confidence, she had deep rooted anxiety which presented with OCD and hoarding behaviours. Unfortunately for Julie shortly aſter moving into supported living the pandemic happened and the previous consistency that she had known from attending her day service was unfortunately stopped and her routine and comforts all stopped as well. Without this security Julie presented with a decline in mental health.
Aſter hospitalisation with Covid over Christmas meant she was unable to be supported by staff who know her well, she had suffered a mental health decline, loss of confidence and increased levels of anxiety.
“It took two years for Julie to be listened to and for a
professional to look past her learning disability.”
It was during this readjustment period that Julie was first referred to the learning disability nurses for support around her mental health which had further declined. This then led to a referral to her local GP with concerns around her mental health and anxiety, however the GP was not able to understand that the decline in Julie’s mental health was not a presentation of her learning disability. The staff who had supported Julie during her appointment were not listened to and Julie’s heightened anxiety was put down to changes in routine and long Covid.
had anxiety. This felt hugely validating to Julie who felt that people just assumed that it was her memory rather than how she was feeling.
It took two years of uncertainty and worry for Julie to finally be listened to and for a professional to look past her learning disability and diagnose her anxiety.
Aſter her diagnosis Julie opted to try medication to help to manage some of her anxiety and as a result has been able to engage more and feel her needs are more fulfilled. Julie was also referred for counselling with a learning disability psychologist and she is still having sessions which she has found difficult. The psychologist did not request Julie’s communication plan and this has meant that they did not understand or respect Julie’s boundaries in regards to her family history until we stepped in and explained her communication requirements.
We oſten find that professionals interact with adults with learning disabilities ’with a one size fits all‘ approach. This means that oſten Julie’s learning disability is seen to the exclusion of her other needs, and quite oſten results in delays in treatment. Whether this be through concerns raised not being taken seriously, a lack of knowledge of learning disabilities or not feeling equipped as a service to treat people with learning disabilities.
Julie’s support staff worked exceptionally hard to help her to regain her health aſter Covid, but also her confidence and to help her to manage her anxiety as effectively as possible. She was supported to create a safe space within her bedroom with storage, so she is able to see her belongings and has a locked box that only she has the key to so she always feel that she has a place of privacy. This is essential for Julie to manage her anxiety and her need to feel like she has the things she needs.
Aſter finally receiving support with her anxiety, Julie was able to plan different activities like going to music shows, theatre trips, zoos, social groups and the icing on the cake, a holiday!
It has been a lengthy journey for Julie to get the help and support she needs. Her learning disability has been viewed as a huge obstacle to her being heard and respected and her other health needs being recognised and addressed.
As Julie’s story demonstrates, so much needs to be improved to ensure that people with learning disabilities and autism have the same access to the help and support they need as any other person has.
https://www.nationalcareforum.org.uk/voice/ncf-policy-agenda/
With long waiting lists for the learning disability nurses, Julie wasn’t seen for a further 12 months and aſter three referrals and multiple GP visits, she was referred to the learning disability nurses for suspected dementia. Instead of the nurses listening to her symptoms and addressing the decline in her mental health she was referred to an external service which had further waiting lists with no further support from her GP.
In 2023 Julie was assessed for possible dementia by a learning disability psychiatrist. Aſter a lengthy and worrying time, (Julie constantly said throughout: “I don’t want to die like my mum”), it was determined that she was not suffering from dementia.
Finally, Affinity Trust were able to arrange an assessment with a learning disability psychiatrist and it was determined that Julie
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An essential step to opening up access, as outlined in our must-haves for social care, is for the next government to commit to enshrining rights, fairness and choice for people, enabling them to access the care and support they need, when they need it. This should be accompanied by proper funding of community health, mental health and social care services. Only then will we see the eradication of the health inequalities being faced by people like Julie.
The National Care Forum is the leading voice and membership organisation for not-for-profit care and support providers. It represents over 170 providers of high-quality care and support for older people and working age adults with learning disabilities and/or autism.
www.nationalcareforum.org.uk - 23 -
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