Care Opinion

Text size

Theme

Language

Videos in BSL or ISL
Help with language translation
Help with reading or listening

Indifferent to our unique needs and struggles

Posted By AstroBoy

"Indifferent to our unique needs and struggles"

About: Dorset County Hospital / Maxillo-Facial surgery Poole Hospital / Maxillo-Facial surgery

(as the patient),

Over the past year and a half, I have faced significant setbacks as a young autistic adult navigating the NHS and the broader healthcare system. My journey has been fraught with desperation as I struggled to make my voice heard by a system that seemed indifferent to my struggle.

My troubles began after undergoing orthodontic treatment in 2021, a decision I made in the hope of correcting my anterior open bite. I invested a substantial amount in Invisalign aligners, assured by medical professionals that this would rectify my dental issues. However, instead of achieving the promised results, I was left with a jaw injury that multiple medical professionals later diagnosed as Temporomandibular Disorder (TMD).

The onset of TMD has significantly impacted my quality of life and my confidence. I firmly believe that the Invisalign aligners were the cause of this disorder, which has left me in constant pain and discomfort. The assurance I received from the medical professionals prior to my treatment now feels hollow and misleading.

Within the NHS, my attempts to seek help and find a resolution have been met with a distressing cycle of what I felt was gaslighting and dismissal. Various consultants, surgeons, and doctors repeatedly downplayed my condition, telling me that it would resolve itself over time. I was bombarded with medical terms like self-limiting, psychosomatic, and stress grinder, which only served to undermine the severity of my situation. Their recommended remedies, such as applying a wheat bag on both sides of my face twice a day and practising different chewing techniques, have done very little to address the underlying problem. These suggestions felt like mere band-aid solutions, masking and normalising the severity of my condition rather than offering any real relief.

Desperate for further clarity and a genuine resolution, I sought the assistance of a maxillofacial specialist privately. I inquired about undergoing a full-body MRI scan to gain a deeper understanding of my condition and its progression. However, I was shocked to discover that the cost of this vitally important diagnostic procedure amounted to an exorbitant amount. I believe this crucial assessment, which could provide much-needed insight into my condition, should have been readily available to me within the public healthcare system from the very beginning.

It is only recently, through my own persistence and self-advocacy, that I have managed to secure an MRI scan through the NHS to finally understand what is going on. This is definitely a step in the right direction. However, again, I wish this could have been made available to me from the beginning to avoid the stress and uncertainty of my condition. The delay and struggle to get a proper diagnosis and understanding of my condition have been incredibly frustrating and disheartening.

My experience has been a stark reminder of the challenges faced by those of us who are autistic, particularly when dealing with a healthcare system that often seems indifferent to our unique needs and struggles - especially when our pain isn't always visible. The lack of understanding and support has been both frustrating and disheartening. Despite my best efforts to advocate for myself, I have felt repeatedly let down.

In sharing my story, I hope to shed light on the shortcomings of the NHS and the broader healthcare system. It is my sincere hope that by speaking out, I can contribute to a conversation that leads to better understanding, greater empathy, and meaningful change. No one should have to endure the same level of frustration and despair that I have experienced. The healthcare system must do better in listening to and supporting its patients, especially those with unique needs like mine.

It pains me to say it, but I feel the current healthcare system as a whole needs radical change and overhaul. The journey I have been on should not be as difficult and disheartening as it has been. We deserve a healthcare system that listens, understands, and acts with empathy and efficiency. I hope my story can be a part of that much-needed change.

More about:
Do you have a similar story to tell? Tell your story & make a difference ››

Responses

Response from Dorset County Hospital NHS Foundation Trust 13 months ago
Dorset County Hospital NHS Foundation Trust

Submitted on 30/05/2024 at 12:50
Published on Care Opinion at 13:49

Dear Astroboy

Thank you so much for taking the time to let us know about all the struggles you have been experiencing to resolve your health condition. I am concerned to read your comments and would welcome the opportunity to look into this further.

Should you wish us to investigate please contact the Patient Experience Team on 0800 783 8058 or pals@dchft.nhs.uk.

Best wishes

Patient Experience Team

Update posted by AstroBoy (the patient)

Hello,

Thank you for your thoughtful response. I appreciate your willingness to investigate the issues I have raised.

Please rest assured that my comments were not aimed at any members of staff in particular. I deeply respect and value the efforts of those who work tirelessly and genuinely care for their patients. It was definitely not my intention to undermine their dedication but to highlight the need for a significant shift in how conditions like mine are ultimately diagnosed and addressed.

I would like to make it clear that I do not hold any ill will towards the NHS. I believe that systemic changes are necessary to improve the approach to patient care for conditions such as TMJ and to prevent others from experiencing similar challenges.

Thank you once again for your understanding and support.

Best regards,

Astroboy

Response from James Rowden, Patient Engagement Liaison, University Hospitals Dorset NHS Foundation Trust 12 months ago
James Rowden
Patient Engagement Liaison,
University Hospitals Dorset NHS Foundation Trust

Submitted on 10/06/2024 at 17:11
Published on Care Opinion at 17:11

picture of James Rowden

Dear Astroboy,

I am so sorry to read about the difficulties you have experienced accessing and addressing your health needs. I am also sorry for the delay in responding to your post. It sounds like the challenges you have faced have been significant and I would like to help where possible to prevent such recurrences. Please do get in touch with us at the Patient Experience Team either by email patientexperienceteam@uhd.nhs.uk or by telephone 0300 019 8499 and we can address your concerns. We can look at your situation and if necessary there are reasonable adjustments that can be made to make your attendances more manageable for you.

Our Trust Values do include Listening to Understand and it would be beneficial if we could have an enhanced understanding of the elements that have been difficult for you so that we might improve our services.

Please do get in touch and I would really appreciate learning how we can make things better.

Send with Warm wishes

The Patient Experience Team

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by AstroBoy (the patient)

Dear James,

Thank you for taking the time to read my story and for your compassionate response. I truly appreciate your empathy and the offer to assist me further. It means a great deal to know that my concerns are being heard and there is a willingness to address them.

Regarding your kind offer to help, I am very grateful. I wanted to inform you that I have recently managed to undergo the MRI scan for my head and neck area (TMJ) at Poole Hospital. This occurred last week after several months of visiting my GP and communicating with your complaints team, who were diligent and understanding throughout the process.

During my visit to Poole Hospital, I was fortunate to be guided by two exceptionally friendly young ladies who oversaw my scan. From the moment I arrived until the moment I left, they ensured I was well cared for. Their professionalism and kindness made a significant difference in my experience. I want you and the team to know how extremely grateful I am for this recent development.

As I tried to express in my response to other comments on this article, the comments in my story were not aimed at anyone in particular, nor were they intended to criticise the NHS as a whole. I understand the immense pressure the NHS is under, especially during these challenging times. Based on my recent experience, it is clear that the staff are working incredibly hard with the resources they have available and I know it is not an easy task. I have seen firsthand that many other young people are also undergoing MRI scans for their individual health concerns, which speaks to the high demand for these services.

The opportunity to undergo the MRI scan is definitely something I do not take lightly or for granted. It was a crucial step in my ongoing health journey and I am thankful for the chance to have it done. In terms of reasonable adjustments, I did not encounter any issues during my latest visit. In fact, I found the environment at Poole Hospital to be quite peaceful, comfortable and easy to navigate. The process was straightforward, and the two ladies who assisted me were courteous and helpful throughout the procedure.

Despite the many challenges I have faced navigating the NHS to date, I am relieved to have reached a positive outcome recently. I am now patiently awaiting the results from my scan, followed by a consultation with the doctor or consultant who arranged it. While I have come to understand, through my multiple visits, that TMJ is a complex and costly condition to treat, with no easy fixes, I remain hopeful that my efforts and feedback as a patient will contribute to more advanced research and understanding of this condition. I believe that proper solutions can be developed to fully address the issues related to TMJ.

Overall, my main concern, which I hope will be addressed in the future, and one that I realise is perhaps out of your control, is the need for a more sophisticated and thorough diagnostic process. The current system, which often relies on brief physical examinations, seems flawed from my perspective. Patients, presenting with problems of this nature, need and deserve access to more definitive diagnostic tools, imaging and resources to prevent further complications down the line. I feel that this would undoubtedly improve patient outcomes and experiences.

Once again, thank you for taking the time to read my story and for your kind response. I am grateful for the support and will definitely be in touch should I require any further assistance or support from yourselves.

Best Regards

Opinions
Next Response j
Previous Response k