"Thank you all for the wonderful treatment you gave my wife at the end of her life"

Staff and friends at Ward 7D Queen Elizabeth University Hospital Glasgow,

It’s with a very heavy heart that I write this letter to you all today. Jacqui is the love of my life, my one in a million and such an inspiration to everyone who met her. My life will never be the same and at the moment I am reeling from the sudden loss of my soul mate.

Hopefully through time I will learn to come to terms with my loss and as Jacqui said to me before she passed make sure I “enjoy” “enjoy” “enjoy” this Christmas and the coming years.

I feel that the time is right for me to now write to you all on behalf of Jacqui and our family to thank you for everything that you did for us during Jacqui’s time in your Ward. Jacqui was as you all know a very reluctant patient. She found the transition very difficult from what was a relatively healthy life up to March 2016, changing to more or less constant Hospital attention through to her passing in October.

None the less, it was always Jacqui’s way to learn to cope and just deal with the cards that she was dealt. For me this is where the staff and friends on the ward came into play. I don’t use the word “friends” loosely; I really genuinely want to clearly state that Jacqui made many friends on the Ward. Whether it was the “wee cleaning lady”, the “girl with the tea” or the wonderful nursing staff, physios or Doctors, they were all in their own way “friends” to Jacqui.

You read all the time in the Press about our wonderful NHS staff and hear it from politicians. However, for me this only became a reality in the past 6 months or so. I spent many hours in the Hospital with Jacqui. Many evenings straight from work, weekends off and of course literally staying by Jacqui’s bedside more or less 24 hours a day sleeping on a fold down bed that the Ward made up for me.

It was at these times that I truly witnessed outstanding professional care. The following terms regarding Jacqui’s nursing care spring to mind when I recall what I was privy to seeing on a daily basis “above and beyond”, “truly remarkable”, “utmost professionalism” and above all “treated with dignity and respect”

It’s only fair for me to say that at times Jacqui and I did become frustrated and exasperated by the hopelessness of the situation. The roller coaster and ups and downs of getting on the transplant list did push me personally to the edge. Cystic Fibrosis did not define Jacqui or our 30 years together. It did however in the end prove what a terrible, horrible and relentless condition it is. It is for this very reason that I feel that you all should be extremely proud for the care that you provide to CF patients. Never once did I see or hear anything but support for Jacqui come from your team. At times our demands were extreme and when Jacqui was really ill and panicking the nursing staff could easily have got caught up in the situation. This was never the case! They always remained resolute and calm whilst looking for the correct option to help and aid the situation.

The human side shown by you all will stay with me forever. I know for a fact that Jacqui looked forward every day to finding out which one of the team was looking after her for that 12 hour shift. Each Nurse brought to that room (which let’s not forget had more or less become Jacqui’s world) a story, a personality, good conversation and demonstrated a genuine interest not just in Jacqui’s health but just as importantly Jacqui’s outside life.

When you spend an extended time in Hospital you will always start to connect with some staff more closely than others and it probably isn’t fair for me to single some “friends” out. That said I feel that it would be remiss of me not to mention a few?

Lisa – thank you from the bottom of my heart for the relationship that you had with my wife. You are a true inspiration and I thank the Lord that you crossed paths with Jacqui. The day of the Jacqui don’t say “can’t” answered by Jacqui saying “shan’t” will live with me forever as will your favourite quote of “don’t focus on what you can’t do – focus on what you can”

Fiona – thank you for all your visits to our home to see Jacqui. She enjoyed hearing about the horses and your constant attempts to get her to use what she called “that flute”

Andy – thank you for your professionalism. The way that you helped Jacqui get prepared with her meds for our final trip to Newcastle was fantastic. Jacqui was so worried and very much in need of the brilliant “one on one” support you provided that day. Jacqui loved your chats and never tired of hearing about your time on “the chase”

Melissa and Alison – what a double act! Jacqui loved it when you were looking after her. She really connected with talking to you both about fashion, nights out etc. Special thanks from me personally to Melissa who looked after Jacqui in the nights leading up to the weekend that she passed. I couldn’t see it at the time but Jacqui was clearly very ill and I am grateful for the fact that Melissa was there. You must have got a terrible shock when you came back from leave to discover that Jacqui had passed away.

Liz – What can I say other than you are a credit to the nursing profession that final Saturday morning I witnessed a type of care that cannot be taught from a nursing manual. Jacqui felt safe in your hands and the way that you comforted and kissed Jacqui that morning was a kindness that will stay with me forever.

Stacey – Jacqui always commented on your eye lashes, I think this was the hairdresser coming out in her. She really missed when you went on leave and couldn’t wait to catch up when you got back to work.

Michael – Jacqui loved your chat. Because of our time over in Belfast she really connected with your accent and brilliant one liners. At times you had to remind Jacqui as to how busy the other staff were on the ward and she used to say to me that Michael had “told me off” Knowing my wife as I do that was no mean feat.

Sharon – Jacqui always phoned me when you were looking after her at night to say how pleased she was that it was you.

Sarah – you had a calming influence on Jacqui and she felt in safe hands when you were there for her. I witnessed you on many occasions calm Jacqui down when she was very worried and panicky. You always gave sound advice in a way that resonated with Jacqui.

Pamela and Nicola – How ironic and fitting that you were both on duty the night that Jacqui passed away. You both know what you did for Jacqui when she was not in a good place with changes in her pain relief on a previous occasion. Jacqui really connected with you both and I am thankful that you looked after her that final night. You were both hurting and visible shaken just like all the family that night. But we felt safe with you both and the lovely way that you presented Jacqui’s beautiful body for us to see shortly after her death is truly a lifelong and lasting memory for all of us.

Joyce – you were so thoughtful and professional with Jacqui. You never ever got any meds mixed up and always remembered about the constant changes in insulin. Jacqui appreciated your excellent competence.

Shabu – Thanks for sharing your holiday pictures and talking to me about Cricket.

Sister – You have a great team and you are a great leader. Up until recently in my job I had responsibility for over 1k staff. I thought I was a great leader and had a brilliant team. I now know that my world of “customer service” is nothing compared to what you and your team do on a daily basis. It is truly inspirational!

Dr McGregor and Dr Bicknell – It seems strange writing this given the circumstances but I feel that I have to say “well done” to you. Jacqui trusted you both, she knew in the end that you were running out of options but you both never gave up on her. I know that you both will carry on the fight against this terrible disease and I pray to god every day that a cure will be found. I know in your position that you have to remain professional at all times and try and not show any emotion. But the day that Jacqui told Dr McGregor and me about not seeing the snow fall ever again was tough for both of us and I’m sure I saw a tear in your eye. You both knew that I was blinded by the love that I have for Jacqui and looking back on things now I can understand why you had the difficult conversations with me that you had. You both did your best and in the end the disease won. My only criticism in all of this that I have surrounds the transplant process and I do harbour some misgivings as to how Newcastle dealt with Jacqui’s case. I can however live with these misgivings as in all probability these misgivings are perhaps unjust and won’t bring Jacqui back.

The CF Sisters – thanks for your many visits to our home and the on call advise that you gave to us throughout the past 30 years that I have known Jacqui. Finally, thanks for the professional and caring way that you handled the recent visit to gather up Jacqui’s medication. As discussed I look forward to meeting for a chat again.

Leslie and Alistair – thanks for the time that you spent with Jacqui chatting through her many pain relief options. A special thank you to you Leslie for organising the cinema visits which Jacqui loved (I think she had me push her wheelchair round to the cinema 2 to 3 times a week so thanks from me for the fitness workout too) Jacqui always said to me how immaculately turned out you are at work with matching jewellery etc. I think Jacqui saw in you her old self which at times did upset her which of course you will never know as showing her feelings like that just wasn’t Jacqui’s thing.

Sejal – Thanks for trying to help Jacqui cope with the awful situation and thanks for sending Andy to see her. She found him lovely and I’m certain they would have hit it off if only she had more time with us.

Everyone else – Massive apologies, I can’t remember all your names. Some examples however are; the young girl with the cats and young family, the staff nurse who I always commented on the fact that they were so skilful with that “blooming mask”, the staff member who stayed all night with Jacqui (she really felt a bond with you and heartfelt thanks from me)

Finally, many thanks to the staff who attended Jacqui’s funeral last week. They may have mentioned that we held a collection for the CF Trust, Butterfly Trust and the Ward. If you give an indication of a good time to come to the Hospital and pass the monies to the ward I would like to do so. I know that after Jacqui’s death I mentioned that I didn’t feel I would be able to come back to the Hospital but I now feel stronger and that it’s my duty to personally thank your nursing community on behalf of my beautiful and loving wife.