"My quality of life is adversely affected"

About: Inverclyde Royal Hospital / Neurology Queen Elizabeth University Hospital Glasgow / Neurology

(as a service user),

I wish to express concerns in respect of my experience of the neurosurgery department at Queen Elizabeth University Hospital, Glasgow. In order to do this, it may be useful to provide some background:

In  March 2018, I was undertaking exercise with personal trainer when I experienced a very sudden, intense pain across the top of the right hand side of my head. Later the same evening, the pain moved across the entire top of my head. At the time, I believed this to be an exertion headache. 

During the course of the next 2 days, I experienced pressure in my head and I was feeling light headed. With hindsight, I now believe that I was also experiencing double vision. Two days later, my symptoms worsened and, following waiting for an exceptionally long period of time for a response to NHS 24, my sister transported me to A&E in Inverclyde Royal Hospital (IRH).

 

During examination in IRH, I was asked to explain the severity of the symptoms on a scale from 1-10. I informed that the pressure felt like between 8 and 9. I further informed that I felt an intense burning in the top of my head. The consultant informed that my symptoms did “not add up”, but contact was made with Queen Elizabeth University Hospital (QEUH) , Glasgow and a CT scan was undertaken, which showed an aneurysm. I was admitted to ward J North, IRH.

A lumbar puncture was undertaken the following day, four days after the onset of my symptoms , the results of which came back clear. I continued to experience pressure in my head and dizziness and my blood pressure was quite erratic at this time. I was advised that a further CT scan would be undertaken.

Over the course of the following 2 days, I remained in IRH and continued to experience pressure in my head, coupled with severe headache, which was put down to after effects of the lumbar puncture. I was prescribed co codamol, which alleviated the symptoms and strangely, appeared to help with the pressure and dizziness.

A further CT scan was undertaken . I was advised that the neurology registrar had assessed that my symptoms were "likely" due to a migraine, which I have never previously experienced. I felt that this was a bit strange, as the symptoms had started 6 days earlier. I was discharged from hospital on the same date. The discharge note provided to my General Practitioner (GP) and I was inaccurate, but did say that a referral was being made to a Consultant Neurosurgeon.

My symptoms of pressure and burning on top of head, pain above right eye, numbness/ pins and needles in left arm continued over the following two days. I also continued to experience searing headaches. I called QEUH to ask about waiting times, assuming that the referral to the consultant neurosurgeon would have been forwarded electronically, but was informed that no referral had been received.

For the next 5 dayys I continued to experience the symptoms noted above and called the GP practice and informed of my symptoms. Later, I received a call to inform that the GP wished to see me. I attended an appointment with the GP and provided her with an accurate chronology of events. The GP then called QEUH to begin negotiation in terms of further investigation.

My symptoms continued and I was readmitted to IRH for the purpose of further scan, then discharged. My discharge note stated that the scan indicated “cervical spondylosis with partial reversal of cervical lordosis... but exceptionally normal extracranial vessels” . The discharge note stated that staff at QEUH had formed the opinion that my symptoms were “likely” to be due to a trapped nerve in my cervical spine.

In early April 2018, I called QEUH to ascertain waiting times and was informed that my referral was on the system, but had not been forwarded. The secretary made the decision to print it off and put forward for processing.

As I had been informed that my symptoms were likely to be due to problems with my neck, I attended a chiropractor and had a course of adjustments undertaken. By the time I had started this course, the dizziness had alleviated, but I continued to experience strange sensations in my arm. Following attendance at the chiropractor, this has now subsided; however, I continue to experience symptoms which were not present before I was admitted to hospital.

I do realise that there are people who are very ill who need urgent attention and that I am not in that category and, whilst extremely anxious, was prepared to wait; however, following diagnosis, I took the opportunity to look at some internationally recognised academic papers and guidance, which indicates that the position of my aneurysm renders it to be at more risk of rupture, even if small.

Following weekly telephone calls to QEUH, I was given an appointment for towards the end of May 2018 at 9am, which I duly attended. When I had not been called at 9.45, I approached the desk, to be informed that the consultant was dealing with something on the ward. I was eventually called at approximately 10.30am, when I offered to provide the consultant with a chronology of what had happened and the symptoms experienced, both previously and current; however, the consultant was dismissive of this and requested that I give a brief synopsis, which I duly did.  The consultant then asked a few questions, such as what is my usual blood pressure (my BP was not taken); do I experience headaches regularly (which I never have), before then undertaking what I can only describe as a cursory examination, which involved the consultant observing me walking from one end of the room to another and brief resistance tests in relation to motor ability in my arms and hands.

 In efforts to alleviate my fears and concerns, I attempted to ask the questions I had prepared. Again, this was treated with disinterest. I then tried to discuss the size and position of the aneurysm, which the consultant responded to by using a computerised aneurysm risk tool, which by all accounts, was akin to a car insurance comparison website, which appeared to indicate that my circumstances were low risk and therefore, the consultant's view was that my condition should be dealt with on a “watch and wait” basis. There was no explanation of  what that would entail. When making comment in respect of comparing this course with that of intervention, the consultant mumbled something which I could not hear. I am therefore none the wiser as to the differences in terms of risk and quality of life between each approach.

The consultant then said that an MRI scan would be arranged in the next couple of weeks and would discuss my case with the Multidisciplinary Team (MDT), but in their view, the proposed treatment plan would be the unexplained “watch and wait” procedure, before rushing me out of the office. During the course of this ‘consultation’ I felt that my concerns were being dismissed and my condition was being trivialised.

Naively, I gave this situation the benefit of the doubt, rationalising that the consultant had probably been dealing with an emergency and had an outpatient list to get through and that I would have the opportunity for further discussion following the MRI scan. I also believed that the MRI would be undertaken prior to any decision being made at the MDT in order that all available information could be considered.

The following day, I received a text requesting that I call in respect of arranging the MRI. I did this and was informed that I would receive a notification via letter of my appointment. At time of writing, I am still awaiting an appointment for the MRI.

At the end of May 2018, I received a letter with a further appointment with the neurosurgeon for December! This caused me great distress as it appears that my circumstances are deemed to be too trivial to warrant proper consideration and discussion, or for me to be provided with relevant, appropriate information and guidance.

I have worked in firstly NHS and latterly Health and Social Care Partnerships all of my adult life and have first hand experience and awareness of the devastating consequences when an aneurysm ruptures, causing a subarachnoid haemorrhage, resulting in physical and mental disabilities, coupled with dire effects upon lifestyle and social circumstances. I am therefore incredibly anxious in relation to my own situation. Particularly as I continue to experience the following symptoms on a daily basis:

Hangover like symptoms each morning (no alcohol), together with staggering

‘Brain fog’

Headaches – mainly over and behind my right eye, but occasionally over both eyes.

Latterly, I have also experienced quite severe headache, where the initial headache was ie across the right top of my head.

Pressure in my head, which increases greatly if I bend over or lift anything

Fatigue

Feelings of exhaustion with any exertion eg 100 metre walk up slight incline resulted in my feeling absolutely exhausted with feelings of pressure in my head. This is particularly disconcerting as before this happened, I exercised regularly, including twice per week with a personal trainer.

My quality of life is extremely adversely affected due to these symptoms, coupled with a profound fear of the aneurysm rupturing. The fact that there is no intention to review my circumstances until December , or provide me with information and guidance, has added to, and exacerbated the symptoms noted above. I am extremely disappointed to have been treated in such a dismissive, nonchalant manner and would have thought that, in this age of promoting holistic, person centred services, this would be deemed to be inappropriate.

    

Responses

Response from Nicole McInally, Patient Experience and Public Involvement Team, NHS Greater Glasgow and Clyde

Dear Scaredeycat

Thank you for taking the time to share your detailed experience on Care Opinion. I am sorry to read about your experience and I apologise for the upset and distress this has caused you. I appreciate that this must be a worrying time for you and it is important you have all the information you need.

I am disappointed that you were made to feel that your concerns were dismissed and that your condition was being trivialised – this is not the standard of care that we should be providing to our patients.

We would like to look into the issues that you have raised in more detail so that we can alleviate your concerns. As this is a public website, I would be grateful if you could email me at Nicole.McInally@ggc.scot.nhs.uk with your personal details.

Many thanks

Nicole

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Response from Lorna Fairlie, Patient Experience, Public Involvement Project Manager, NHS Greater Glasgow and Clyde

Dear Scaredeycat,

Thanks for taking the time to talk me through your concerns and I hope that our conversation has given you some reassurance about the way forward. As discussed, I will get in touch with colleagues and be able to update you further as soon as possible, but in the meantime please do not hesitate to get in touch if you have any more questions.

Best Wishes,

Craig Broadfoot,

Clinical Services Manager

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