Tribute to Dawn
Everyone at PINNT wants to pay their respects to Dawn Carter, former Chairperson of PINNT, who sadly passed away on Thursday 28th March 2013. Dawn made a huge contribution, not only to our charity, but to the wider world of artificial nutrition and homecare.
She had been on HPN for almost 22 years when the decision had to be made to consider a transplant. In December 2011 Dawn faced her biggest challenge and had a six organ transplant. Following surgery Dawn strived incredibly hard so she could return to the people and place she loved the most, home. With drive and determination she faced life with gusto and set about getting back to work and enjoying her life to the max. Sadly this ended too soon.
Dawn’s involvement with PINNT came at a time when the voice of the patient was relatively unheard and the concept of people at home on HPN was still rather novel. I recall the first time we met. Dawn attended a PINNT AGM in Birmingham. She arrived connected to a rather large pump attached to a cumbersome drip stand and basically said she wasn’t prepared to live like this and wanted to know more about what PINNT could offer. It didn’t take long to work out that Dawn had so much to offer herself. She was a qualified nurse who was now on the other side and she felt there had to be more to this than she was experiencing at the time. Well, time passed and it didn’t take Dawn long to get involved. The priority was to get herself sorted out medically and she transferred down to London where we became buddies at the same hospital. This was a crucial time in Dawn’s care. She underwent a complete overhaul and finally went home a completely different person; her feeds were adjusted and she felt so much better and this shaped her ability to cope and face the future.
Dawn’s involvement with PINNT escalated fairly quickly. One of our first official engagements together was to give a presentation at the National Nurses Nutrition Group. We’d quickly learnt that despite being on the same treatment our protocols and procedures varied hugely, so we decided to present this to the nurses and plead for consistency in what patients were taught. We could not work out why one could do a connection in 15 minutes while the other took nearly an hour. It was no surprise to us when we chatted a while back about this, that in some instances it’s still the same for some patients!
She was the first chairperson of LITRE (Looking Into The Requirements for Equipment and Services) and brought together a group of people who were keen to improve products and services for patients on home artificial nutrition. She steered the group through key projects; the colours of dressings, clamp designs, x-raying of feeds and fluids at airports to name but a few.
Dawn took over the chair of PINNT from Geoff Lennon and again was determined to be very hands on. No-one brought any major skills to PINNT so it was very much learning as we went along. Despite people having titles and positions everyone pitched in to produce information and we had so much fun along the way. Dawn took over the official position of editor for Online, our newsletter, and always ensured it was delivered on time. The production methods were a little dodgy to say the least on occasions but we always delivered a good read for members. The format and production of Online remains very much the same today as it did then, a legacy that members still benefit from.
What many people will not realise is that Dawn and I first went to the Oley conference in the USA without the use of a portable pump. Way back then (violins start now ….) we didn’t have that luxury; we had static pumps and cumbersome drip stands. This is where we saw portable pumps for the first time, so when we got home we set about tracking down a supplier and through LITRE; we ensured they were introduced into the UK. Again, there was no choice then, it was only one type and one only but we were happy merely with the thought of freedom to feed on the move. The pump was heavy and cumbersome despite being portable. It had many issues with the battery and together we strived to correct this and work with the company to overcome this issue – we won!
Initially the numbers of HPN patients were small so we all pretty much knew each other, so we could share very easily and offer support. There was no social media to aid this so we relied on the telephone a great deal. I fondly recall when PINNT first acquired fax machines, then the introduction of emails – great assets that helped PINNT enormously but we never stopped talking and listening.
Dawn played a pivotal role in the development of PINNT and the journey we have taken. Dawn was also a representative for PINNT on BAPEN council (British Association for Parenteral and Enteral Nutrition). At the time, this again was ground breaking, as it was the first time that patients were part of a professional body. Initially Dawn and I quaked in our boots when we sat around the table but quickly learned if we didn’t speak up we’d never be heard. We needed to keep the healthcare professionals grounded, to be a constant reminder that at the end of all they did, were people who had lives to live.
One person Dawn had a lasting impact on was Gil Hardy. At the time Gil ran Oxford Nutrition and has subsequently moved to New Zealand. Gil recalls the first time he met Dawn. “I first met you and Dawn in the bar of some hotel at one of the early BAPEN conferences, where you both gave me my first education about living with HPN and the pros and cons of imbibing alcohol with (or without) intestinal failure (IF). I still haven’t learned the lessons about the alcohol, but often reminisce about that meeting in my HPN lectures! I have always valued those early conversations. The immensely useful advice and the fact that I subsequently became friends with you both, and with others in PINNT, has been a constant privilege for me".
Dawn, Carolyn and Gil
Industry dinner – BAPEN conference
So while Dawn’s family find the strength to get through this difficult time, we acknowledge the legacy that has been passed down through PINNT because of Dawn’s contributions and efforts to support people in similar positions. Dawn went on to live a full and happy life on her PN; she travelled with Martin far and wide and they shared many happy times. Dawn was a true friend to many and a loving daughter and sister.
Illness brings people together and they are then able to support each other. It takes a certain kind of someone to willingly give so much of herself for the sole purpose of helping others.
We are so grateful to have had Dawn’s support and PINNT will continue to offer the support Dawn came in search of and then provided to others.
It was a privilege to call her my friend.
If you have any queries about the medical aspect of this article please do go and talk to you own healthcare professionals.