"Staff alert to the difficulties which had cropped up for me due to being disabled"

About: Stoke Mandeville Hospital / Maternity

(as the patient),

My baby was born early march 2014. I was 41 when he was born, so an older Mum, and I also have two conditions which made the pregnancy & birth a bit tricky: recurrent herpes encephalitis and multiple sclerosis, which had compromised my mobility and fitness considerably.

My pregnancy was overseen by Felicity Ashworth, whose pragmatic approach was very reassuring to me. I also had a meeting with the anaesthetist due to previous difficulties with small gaps between

During the pregnancy, I attended clinics and scans at Stoke Mandeville. With one exception, I found the staff very helpful and kind. The reception staff; the nurses and assistants in the clinics; the midwives; my consultant; the team who do the tours of the labour suite: all of these people were absolutely great. The first sonographer ( a lady) and the second (a man) I saw were also lovely.

Unfortunately, the sonographer who did one of my later scans was very upsetting: My father died during my pregnancy and I wanted my Mum to feel as involved as possible, so I invited her. I found this particular sonographer brusque in the extreme, absolutely lacking in empathy. She did not explain the scan or what she could see on the screen, where the previous sonographers had given me a lot of reassuring detail and answered questions. She also initially refused to allow my Mum to come in, even if my husband left the room. This was despite the particular circumstances with my Dad very recently dying. I found her to be most unsuited to dealing with patients face-to-face. I also know from other mums I have met since the birth that my experience was not isolated.

The birth was an elective Ceasarean due to my health issues, and the date set for the beginning of March 2014

On that day I met the surgical team and the anaesthetist but unfortunately there were a lot of emergencies and after several hours of waiting, it just wasn’t possible for my operation to go ahead.

I was very upset because I had really liked the people who had seen me that morning, and I didn’t really want anyone else to perform the operation having already built up trust.

The next morning, another theatre was opened so that my operation could definitely take place, and to my surprise, John Heathcote, the SHO from the previous day, had come along to do my caesarean. Adam the anaesthetic registrar also came to say hello and I must say I was very touched by their effort to make up for the previous day’s disappointment and make the birth more special.

Minal Sabba worked with John and NIcki Hanson managed the anaesthetic once the spinal block had been administered and this was the only point which went a bit wonky.

Problematically, I have a back which is quite damaged and it has historically been very difficult to have lumbar punctures – in one case x-ray guidance for the needle was required. Due to this and also to my multiple sclerosis, I was very anxious about any sort of epidural or spinal injection.

Having discussed this at length with the consultant during my maternity clinic appointments I was confident that a spinal would be a last resort, and also that my worries about physically getting the needle into a gap between my vertebrae were taken seriously.

It took about half an hour of trying before the consultant anaesthetist was asked to do the spinal. I was in a lot of pain from the various attempts already and unfortunately during one of his tries, nerves in my spine were hit causing my left leg to go completely numb immediately. I have been left with chronic sensation and pain issues in my left leg which did not exist before the birth. Initially, my MS consultant assumed that the nerve was bruised and I was expecting a recovery. Sadly this has not been the case and my mobility, which was already impaired, is further compromised.

I would like to ensure that this does not happen again. I am not sure how that can be achieved however, but I do think that it’s possible that somewhere along the line someone may have thought I was exaggerating the problems or was being over-anxious.

The operation itself was my first experience of surgery. The whole team, including the midwife Christiana Kolade who took me out of the theatre afterwards, were absolutely brilliant. The atmosphere was relaxed and I felt completely safe. They made my husband feel welcome and were very kind to both of us, and John Heathcote did a really great job of stitching me up so neatly.

What nobody had really expected, myself included, was how debilitated I would be after the operation.

Firstly, the damage to my nerve meant that I had complete loss of sensation to my left leg, meaning I could not weight-bear. I was not able to get out of bed or walk to the bathroom, which was outside the ward. I also could not move myself properly in the bed, which made me very uncomfortable.

I was lucky in that my husband and Mum were able to spend time with me to help out. I was having trouble with breastfeeding and was unable to dress or do a lot for myself. Being disabled is not embarrassing, but needing help is very disempowering and particularly as a new Mum I was really struggling with that. I didn’t want to ask for extra help.

There were staff who were very alert to my situation, for example I was helped on two nights by a midwife called Sharon Kelleher (sp? ) who looked after my baby when he wasn’t sleeping so that I could rest. She saw how desperate I was and offered to help, when I would not have been able to ask.

I am most appreciative that Eileen Dudley saw that I needed more support and arranged for me to have a private room for the next few nights so that I could have someone staying with me to help with the baby, without intruding on other patients. This was totally unexpected. I can’t tell you what a difference that made to the whole experience.

For example, because of problems with mobility, I still needed a catheter, and it’s difficult to keep your dignity with that when others are already up and about, but with a private accessible bathroom, it was possible for me to be moved in a wheelchair and assisted to have a shower without worrying about being properly dressed or covered, which would have been exhausting at that stage (I think Angel Delacruz was my helper for that! ).

Eileen Dudley was very alert to the difficulties which had cropped up for me due to being disabled and helped me in a sensitive way which made me feel noticed and cared about, despite a very busy period. I am very grateful to her particularly for making James’ birth a better experience for all of us.

I am so sorry that sitting down to write this has taken so long, and I do hope that all of those people who helped me are still there.

I am looking forward to coming back for the next baby.

Thanks to all the staff including

Elieen Dudley; John Heathcote; Minal Sabbal; Adam Richardson Raine; Christiana Kolade; Angela Delacruz; Sharon Kelleher; Leua Ladina; Laye Khim Lim; Lillian Hunter; Alasdair Ankers; Michelle Garland; Sam Gayle; Nicki Hanson and not forgetting the ladies in the breast-feeding clinic.

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Response from Anthony Banton, Patient Experience Manager, Buckinghamshire Healthcare NHS Trust

Dear responder

Thank you for your kind words of encouragement. Every month in 2014/15 we receive over 2000 compliments from individuals like yourself and where possible we pass all compliments onto the relevant staff as we know your comments contribute to encouraging our staff to continue to provide a great level of care. however,

I am sorry to learn that you have also had a poor experience of patient care in parts of the care pathway. Please contact me on my direct telephone number-01494734481 to discuss your experience and how I may be able to help to improve the situation and ensure certain things do not happen again.

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