A powerful patient story from a stroke survivor- Make May Purple

My Story.

On the 17 July 2017 I suffered a severe stroke and was admitted to Salford Royal Hospital where I remained until October, when I moved to the Devonshire unit in Stockport. In December of 2017 I suffered a second stroke and was readmitted to Salford Royal Hospital where I remained until I came home in April of 2018. 

After I left the Critical Care Unit at Salford, and moved onto the rehabilitation wards, I became aware that my vision had been affected and I informed the doctors on the ward that I had severe double vision and I was finding it hard to focus. Initially my concerns were dismissed by the doctors and they were only focussed on my physical rehabilitation. The ward had a number of physiotherapists, occupational therapists and rehab assistants who were all working on my mobility and getting my limbs functioning. There was nobody on the ward with specialist knowledge of issues relating to vision and despite repeated requests my husband and I were unable to get the ward staff to bring in a specialist. 

When the physiotherapists were working on my mobility I repeatedly told them that I could not see properly so could not walk or climb stairs. The double vision made it extremely difficult and scary to try to go up steps and although I kept telling the rehabilitation staff this they did not seem to take my concerns on board. 

As my strokes had affected both sides of my body I needed to work to get both of my arms and hands working. I was given sets of blocks to put into holes but this again proved very difficult because of my double vision. 

The doctors on the rehabilitation wards eventually gave me an eye patch to put on my right eye to ‘mask’ the double vision. This did help but was not helping to correct or resolve the double vision, it just covered it over. One of the doctors told me to alternate which eye I wore the patch on and one of them said to keep it on one eye, contradicting each other and making me feel that they did not know the correct way for me to use the patch. When the eye patch broke the ward found it difficult to find a new one and I was often left without an eye patch.

There was very obviously a lack of understanding and expertise on the wards regarding problems with vision resulting from a stroke and the lack of a worthwhile response from the Doctors was both disappointing and upsetting. I felt that my concerns about my vision were ignored and despite repeated requests to see a specialist I was not referred to one. My husband took my concerns to the senior staff on the ward and they said on more than one occasion that a referral to the eye hospital had been done. While in hospital I did not get to see anyone about my sight.

With my vision impaired I found the strokes much harder to cope with and being unable to see properly made simple things like going to the toilet much more difficult. I often felt unsafe being out of bed so preferred to stay there rather than try to mobilise. No-one seemed to understand the impact that the double vision had on both my recovery and my emotional state. 

I honestly feel that the lack of care related to my vision slowed down my recovery and kept me in hospital longer than necessary. The double vision made it so much more difficult to walk and go up steps, use walking aids and read or write. If there had been some input from the eye specialists at an earlier stage of my rehabilitation I would have been able to mobilise much quicker and so my physical recovery would have been that much faster.  The psychological impact of my impaired vision is impossible to describe. To be in a position where your vision has been rendered almost ‘useless’ and have your concerns disregarded by the rehabilitation staff is truly soul destroying and many times during my recovery I felt like giving up, seeing no point in continuing to fight if I was never going to be able to see properly again. I often wonder if other patients, in similar situations to mine, give up trying to recover because they have lost their vision and so do not get better.

At the beginning of May 2018 I attended my first appointment to see an Orthoptist at Manchester Royal Eye Hospital. We met Carly Hegarty and I was able to give her a full description of my history in terms of my strokes and my problems with my vision. I was very surprised when Carly said that before we left the hospital she would be able to do something for me. After a lot of tests and measuring of my eyes Carly fitted a prism to a pair of glasses and the effect on my vision was immediate and astounding. My double vision was instantly resolved. Both my husband and I were somewhat emotional when Carly corrected my vision and the relief was fantastic. As well as relief I felt a lot of anger. I could not understand why, if the cure was so quick and simple, I had been left with double vision for so long. 

After initially fitting the prism, the Eye Hospital have carried out Toxin injections into the muscle around my eye to make the correction of the double vision more long term, doing away with the need for the prisms. This again is a fantastic process, allowing me to see properly and improving my quality of life immensely. 

I spent a total of approximately nine months is hospital, and every day of that was both difficult and distressing. Recovering from a stroke is probably the hardest thing a human being has to endure and I feel that the lack of input from an Orthoptist at an early stage extended my stay in hospital and increased the distress I endured. The distress is of course impossible to quantify but the extended stay in hospital is not. Had my sight been investigated and resolved at an earlier stage then I would have learnt to mobilise much earlier and therefore been discharged sooner. If the time I spent inhospital had been reduced by just ten percent I am sure that the saving to the hospital would be more than the annual cost of employing an Orthoptist. If this saving was multiplied by the number of patients like me, stuck in a rehabilitation ward without anyone looking into the effects of the stroke on theirvision, the financial benefits of putting Orthoptists into the wards would be huge. 

It is a huge disappointment to know that, despite the NHS providing life saving care to me on an enormous scale, they are missing the opportunity to improve people’s recovery and quality of life at an early stage by not providing expertise on vision related aspects of strokes during rehabilitation within the hospital. 

I would also like to add that the care and compassion that Carly showed from the first time I met her was fantastic. She and the rest of the team in the eye hospital are very caring and dedicated and what they can do is truly life changing. I do not think that people elsewhere in the NHS are aware of, or fully appreciate, what they can do. In my case the NHS missed an opportunity to improve my quality of life, aid my recovery and save themselves an enormous amount of money by providing this care and treatment much earlier. Hospital beds are being tied up because people who have suffered strokes are not getting the treatment they might need. Fortunately I was able to communicate relatively soon after my stroke and make people aware of my double vision. Unfortunately no-one in the rehabilitation wards had the knowledge or ability to offer any treatment or address my concerns. 

Now that I am at home, and continueing to get better, I appreciate my vision being correct more than I can put into words. The Orthoptists are a fantastic and dedicated team and what they can achieve is life changing. They have drawers full of prisms each of which can correct someone double vision almost instantly and there are hospital beds full of people who have had strokes and could benefit so much from the early intervention of the Orthoptists service. I very much hope that the NHS can see the need to bring these two things together and see the benefits to both the patients and the service itself.

I, and my husband, would like to thank the Manchester Royal Eye hospital, and in particular the Orthoptist service, for their help and for improving our quality of life. What they do is truly impressive and I hope that the service is expanded and made available to more patients, provided earlier where appropriate, and continues to have a positive effect on more lives. We would also like to thank Carly for her care and understanding during my treatment. She has a great understanding of just how important my vision is to me and showed real determination to resolve my condition.