Home Artificial Nutrition (HANs) Week Downloads:
I'm 34, live in Worthing and work in finance. I'm hooked up to my artificial feed for a minimum of 12 hours a night usually from 6pm-6am, when I get ‘off’ ready for work 365 days a year - but I also eat and drink as I please probably a bit too much!
I have been on TPN (total parenteral nutrition) since I was 18 years old so 16 years - wow sounds a lot when I say it like that! TPN has lots of limitations and puts some serious challenges on my family and myself but thinking really clinically about it TPN really helps me to live the life I want to live. It keeps me feeling so much better than when I don't have it, so much so that after a day at the office I'm thirsty and hungry and look forward to getting connected up.
The challenges that TPN throws at me have often left me searching for answers or help with how to deal with certain aspects of my condition. The PINNT charity has been there for me and my family since the very beginning of my illness. I really can't say enough good things about the charity - PINNT has helped me from advice on my condition, specialist knowledge of technical equipment, putting me in touch with other people in a similar condition, the list goes on. All this is done in an empathic and supportive "can do fashion" I really have met the most inspiring positive courageous people in every dealing with PINNT.
My one wish: There are lots of great things about the NHS, however, one thing they are not very good at is communicating between hospitals and even their internal departments. To have a one-stop source of information on my issues that could be passed to experts that can help me via a technical database -no matter where I am in the UK would really help get support and help moving quicker for me when I need that help.
Jacob who lives with his family in Cirencester has recently started HPN (home parenteral nutrition) says “I’m 11 and feel so much better now, and I can do so much more than I used to.”
Kathy, Jacob’s Mum, says: “Improvements in Jacob’s health recently has been astounding. He has put on 7kgs, grown 3cms and is feeling a refreshing amount of boundless energy and has the energy to take part in activities - just in time to start school in September!”
“HPN was new to us and this is where the support of PINNT was invaluable. PINNT has provided access to a wealth of experience and knowledge, very much appreciated particularly when we were embarking on HPN. This is why we as a family are supporting PINNT and its first awareness week."
My one wish: That all patients and families managing ‘life on-line’ have a good relationship with their healthcare professionals - this is vital. Ours are fantastic, with regular contact via emails and more recently supported by an online tool that facilitates effective communication between all our professionals and us.
Congratulations to PINNT for championing and promoting these important standards through their Awareness Week and the production of their leaflets for professionals and patients. The questions asked in the leaflets about whether patients are receiving the training, support and involvement that the NICE Quality Standards promise will help us all measure and review our performance – and demonstrate clearly how in partnership we can improve the patient and carer experience of nutrition support.
“I’m 70 and I live in London, close to Crystal Palace but despite my health I don’t feel my age. I was a primary school teacher with responsibility for music and I still play my guitar for under-fives sessions in four venues each week, just as a volunteer.
Due to Crohn's since aged 19, most of my small bowel was removed in 2010 leaving me with 70 cm of bowel and a jejunostomy. I have three litres of PN each night and occasionally a litre of saline when dehydrated. Living alone, daunted at first, I soon settled into a routine of connecting and disconnecting. I eat well, though it's a low fibre diet but have to restrict my drinking as much as possible. I swim, walk and cycle and feel fitter than I did for the previous 48 years.
It was wonderful to find and join PINNT. I had felt very alone and it was so good to speak to others in a similar situation and to get advice and support. It has made such a difference to me that I want to help others who still feel as cut off as I did. I help by proofreading the magazine 'Online' and am helping to set up the new London Group.”
My one wish: I wish it were easier to contact my hospital. I always have to leave messages and often wait a long time to actually speak to an appropriate person. Clinic appointments are always further apart than my doctor requests and are usually altered at least once. I understand how busy they are but I wish I could see someone who knows about my condition more regularly.
Toby (pictured centre with his sisters) lives in Barkisland near Halifax with his family. Suzanne Waller, Toby’s Mum says: “Toby is ‘nil by mouth’ - he knows it won’t suit him so he doesn’t eat so he is very good with his line. The whole family focus is Toby - his sisters Isobel 6 and Lily 10 look after him!”
“Toby has been tube fed for over 3 years and whilst it has been a hard journey we have willingly learnt to adapt and have accepted that this is our life! Toby is on over-night continuous feeds and more recently has gone onto continuous day feeds. It doesn't stop us or Toby doing anything and getting on with day to day living - it has made us closer. We live life to the full and enjoy everything as much as we can even if that means Toby carrying his backpack round and us with all his supplies. It is hard I won’t deny but my son smiles and it keeps us going! Toby has adapted really well, whilst he finds it hard and sometimes gets frustrated, he is quite proud of his "special" button!”
“Artificial nutrition has got us involved with many groups including PINNT particularly on Facebook! Being able to talk to other parents in the same situation as us has made it much easier to deal with, plus sharing their knowledge and experiences and helping us to move forward. I only wish there was a local PINNT group where we could meet up, rather than virtual chats!”
My one wish: That all healthcare professionals and others such as the school would talk to one another so we can experience a seamless approach to Toby’s care so he - and we his family - can live the best life we can. It is a nightmare at the moment trying to get everything to join up!
As Chair of BIFA, I confirm that we share PINNT’s ambition to improve the experience of all patients on Artificial Nutrition, when in both hospital and community settings. We also agree that this will need us to work together closely to see that the new NICE Nutrition Quality Standards are met. BIFA will distribute immediately the two leaflets that PINNT has prepared aimed at health professionals and patients, so that there is immediate attention paid to the NICE Quality Standards and how they apply to IF patients.
“I’m 33 and I live in Blaydon, Gateshead and have been fed via a PEG tube for over 7 years due to complications from a long history of severe anorexia nervosa. This therapy was a last resort treatment for me with all other options being exhausted and having failed. I am now in a position where I am healthy enough to have a life, but with years spent in and out of treatment and now having to depend on this unusual form of therapy I felt a normal life was something I could never attain.”
“That is until I discovered PINNT. Volunteers from the charity showed me that regardless of being tube fed I could live a normal life ‘on-line’ and I have since returned to university, completed my undergraduate degree and am now studying for a Masters in public health. Without the encouragement of PINNT I fear I would never have made it this far. This is why I am taking part and supporting PINNT’s first awareness week.”
My one wish: I could set my own days for my appointments as this is an issue for me as the clinic is on Tuesdays and I have to be at university all day; access to later hours for appointments would be beneficial, or ability to select days rather than one specific day. As you can imagine, having to miss the same classes every time I have a routine appointment can be a huge disadvantage and my lecturers - although understanding - can get a little irritated when I seem to swan in and out of lectures. I am sure others on artificial nutrition would also benefit from being able to negotiate more convenient appointments.
Laura Lauren’s mother says: “Lauren is 7 years old and lives with myself and step dad Cameron and her sister and brothers in Barrhead, Glasgow.
Lauren was born at 27 weeks and had a very rocky start and had to undergo major bowel surgery. She was critically ill and doctors didn't hold much hope for her but she amazed everyone by fighting on. After 7 months in hospital we were allowed her home. Since then she has been continuously fed through her gastrostomy which to be honest saved her life as she couldn't absorb anything even breast milk, Lauren has had more surgery than I can count due to adhesions and obstructions in her bowel but she started school with her bag pack and feeding machine and until last year was leading a fairly good quality of life. But December last year she was becoming more unwell, losing weight and wasn't coping with feeds she was admitted to hospital in January. She now has a permanent colostomy and a permanent central line for total parenteral nutrition and we now manage Lauren at home having had training - but Lauren has had several line infections and we are now home on ‘pass’ and hope to be discharged next week from hospital.”
“Life for Lauren has been difficult and there will be more challenges for her in the future but she just accepts this is her life - probably accepts it better than us! She is in mainstream school with lots of support. Having a child who requires 24 hour feeding is very hard as it impacts on all our lives but without it we wouldn't have Lauren with us - but without the help and support of our feed supply company and PINNT it wold be even harder!”
“PINNT has been great we get advice and support and makes us feel that we aren't alone. When Lauren gets a bit older I'm sure she will also benefit from PINNT- she will be able to read about other children who are just like her.”
My one wish: That our specialist hospital team had a better understanding about how Lauren's condition affects the whole of her life. They do just focus on the physical effect and feeds but they don't understand how much it emotionally affects Lauren by missing school, not being at home with her family. I wish they could live a week in our shoes then they might get a better understanding of what our life is really like.
'NNNG believes that where good nutritional care is concerned, it is YOUR body and YOUR decision regarding what works best for YOU! Healthcare professionals should be working with patients when deciding what feeding pumps are used and the best times to connect/disconnect PN, and Homecare services should be patient not company focused.
“I’m 44 and I live in Heaton near Bolton and I have been on artificial nutrition for 16 months due to a number of underlying health issues.
People often have very negative responses to the sight of my nasojejunal (NJ) feeding tube. However, I love my tube! Before I received the blessing of artificial nutrition, I had not been able to eat food properly and was trying to survive on a few scraps of food every day. Thanks to tube feeding, I’ve been able to go back to running my own successful business and a work advice line for disabled people.
Having a tube is often a positive thing. It often means that it is preventing you from the very painful and debilitating effects of malnutrition. Receiving AN has been a very positive experience for me and my family, but it is obvious that people’s reactions to the tube often reflect a very negative attitude.
PINNT provides common sense information that people need to navigate through the system. It is also a very useful source of positive peer support!
My one wish: I had been told about PINNT as soon as artificial nutrition was suggested. All healthcare professionals should give out PINNT’s details straight away. I have learnt so much about daily living with AN from PINNT - and that’s why I am supporting their Awareness Week.
"I’m 12 years old and live in Halesowen, Birmingham with my Mum and Dad and brothers and sisters. Being on AN is boring and restricts me when i am in my wheelchair on my AN - but the good thing is that I am still here today and it has helped me over the years."
Mum and Dad Graham and Lorraine say: “Graham has been on AN for 12 years - it has become a lifestyle as he is now dependant on AN everyday of his life. As a family we give Graham the full support he needs and this has resulted in our family becoming stronger and sharing that ability to work together to help Graham and his needs.
We have only just joined PINNT, attending our first meeting in Birmingham. From a family point of view it was good to talk to other families who are in the same situation, hear others stories and share and receive advice. From our son’s point of view he has had the opportunity to meet other children/adults with central line and gastronomy buttons. This has resulted in him saying how he doesn't feel different after seeing other people in the same position as himself.
My one wish: It would be great for the family to be trained and allowed to administer intravenous antibiotics at home when needed. There have been many occasions where Graham has been admitted to hospital for long periods of time due to us not being able to administer them at home by trained family members - and this does affect us all.
BAPEN Medical would fully support PINNT's desire to improve patient experience of artificial nutritional support both in hospital and at home. We are glad that the NICE quality standards highlight this area and would encourage our members to publicise and support the first Awareness Week on Artificial Nutrition. We hope this publicity will make patients, the public and health care staff more aware of the patient experience of Artificial Nutrition and hence improve it!
I was 50 this year and live in Blackwood, South Wales. I am married to a Baptist minister called Sue. I have one son Daniel 25 from my first marriage and a step son Josh 21. It was a stressful time for the family when I was first ill in hospital. My son had just started university, when I went into a coma for 7 days. He was brought home because my family were told that I wasn't going to survive the weekend. Obviously by the fact I am writing this, I did, and I value every day with a new outlook!!
At present I am on artificial nutrition (AN) 4 nights a week, (just swapped from 5 as I was getting fat!). I work, so usually plan to have the weekends on feeds to leave some flexibility during the week. In general I don't let my condition get in the way of my everyday life. Artificial nutrition is now part of my life, but it won't rule my life. It would be the thin end of the wedge to not going skiing!
When I first started on AN in Jan 2007, it was a very lonely place to be, left at home with a load of kit and feeds in the fridge and to come to terms with what was now the way of life for me. I attended a PINNT weekend away early that year, quite anxious and left with a totally different outlook. To see and talk to others not only in the same position, but veterans who have been on AN for 20 years - that’s why I am supporting PINNT’s first awareness week.
My one wish: That ‘outside’ people understood more about the amount of equipment and feeds needed to go away on holiday. My big bug bear is with the airlines and the way they want to charge for taking essential medical stuff away.
Tuffel Leo Brink Westenholz
Evelyn, Tuffel’s Mum says: “Tuffel is 1.5 years old and has been TPN dependent since day 1. He first received it at St.Thomas’ hospital in London over 24 hours. We were prepared to stay there for 2-4 years but were discharged after ‘only’ 8 months. He turned out to respond to PN so well and we were even able to reduce his hours [on AN] to 12 so he can be completely free and wireless in the day - so we charge him at night like an i-phone!
We now get the PN delivered to our house, enjoy a free medical fridge and running a mini hospital from our flat in Clapham. What a good reason to get on the property ladder! We have support through our care package and our hospital team is outstanding.
Thomas, Tuffel’s Dad, and me are fully trained to hook Tuffel on to his feeds and take him off. It's become part of the bedtime routine. Who needs baths anyway! For those in love with details, a baby like Tuffel takes 1200ml every night 7 days a week through his central line. This means he wees like a drunk throughout the night. He also does number 2s so I stay busy day and night but he is worth it! Plus I get more time to attack him with kisses. We have a very high quality of life, traveling abroad, enjoying London life and even when hospitalized Tuffel takes advantage of the selection of toys he doesn't get at home, such as the baby walker and hours of bubble fun.
PINNT has been very helpful. To hear other's experiences and compare notes, not to be alone in this high maintenance treatment is invaluable. Also for travel insurance - I might have spent 10 times more had I not had the notes from PINNT. Also the pump report meant we were equipped with all we needed to ask for the right one which we knew from PINNT. So really, invaluable - and that’s why we are supporting PINNT’s awareness week.
My one wish: We are really lucky that children are treated extremely well. I'd love to bring that level of care into adult care- the world would be a much happier, healthier place with more fun. Soap bubbles included!
We are delighted to hear of the first home artificial nutrition week run by PINNT. The PEN Group pledge to support PINNT in their campaign to ensure that patients on Home Artificial Nutrition Support receive the information to self-manage where possible and be involved in their own care and goal setting to ensure that their artificial nutrition safely meets their individual needs.
“I’ve just hit the big 50, live in King’s Lynn, Norfolk, and am married to David with a daughter Lisa and 3 grandchildren.
I was diagnosed when Lisa was a teenager which was very difficult for her as I was very ill - it was touch and go! - and for a long time I had no diagnosis and was also in a lot of pain.
Finally I got a diagnosis with the help of a new gastro surgeon and was put on artificial nutrition - first enteral feeding which did not work and then TPN - which I did not want to have: I thought my life was over.
But my consultant and dietitian had heard of PINNT and put me in touch. One weekend, Carolyn Wheatley came to visit me travelling a long way up to Norfolk - and we talked. Afterwards I realised that my life could go on - maybe not as it was - but it would not stop me from doing everything.
I have been a PINNT member for 12 years now and have just joined the Committee and continue to help organise the PINNT meetings here in East Anglia.
My one wish: That I can continue to help others deal with and accept the situation they find themselves in with regard to their health and artificial nutrition and overcome their problems - that will help me too!
Tara, pictured with her son Owen aged 7, says: “We are a busy family, living in Derby, coping with the significant medical needs of our son Owen, but despite the constant clinic appointments and care that Owen needs we are able to spend time doing things that other families enjoy - time with family and friends in the park, day trips taking with us just the essential equipment for Owen.
Owen has spent his life in and out of hospital, with many complications which have resulted in cerebral palsy. Despite everything he is usually a happy boy taking in everything that is thrown at him. He has recently been diagnosed with kidney disease and is soon going back on TPN which we hope will help his well-being.
Owen, who is now seven, goes to a special school where he has made a number of friends, but family life is difficult. PINNT really helps us to feel less isolated and helps to share ideas about living life with artificial feeding. This is why I am helping to set up our new PINNT group in Nottingham which is where we go for our hospital support - and the first awareness week.
My one wish: To ensure that local hospitals could be more involved without the need to travel to more specialist units, or if that is not possible then at least co-ordination of the clinics we need to attend to be held on the same day - that would be great!
BSPGHAN is delighted to see your campaign in August to promote these Quality Standards in adults. We look forward to progressing this agenda with you for children.
The BPNG supports PINNT’s first home artificial nutrition awareness week and encourages all our members to read the information leaflets, engage with your patients and look for ways to make a difference.
“I’m 16 and live in Kent with my parents and younger brother Jamie. Recently both Jamie and I ran the BUPA Westminster mile in aid of PINNT - I was pleased with my run although Jamie beat me!
I was born with half my oesophagus missing so as a result I had a feeding tube inserted immediately. After 2 months they moved my stomach up to my oesophagus and I had another tube fitted into a different part of my abdomen - so I have been tube fed for nearly 17 years now.
PINNT have been great for my family and for me as it shows us that we are not alone in our situation and it has also provided us with a lot of practical and emotional support over the years. The PINNT weekends also provide great opportunities for us to meet other people in similar situations to myself and my family. That’s why I am supporting the PINNT awareness week.
My one wish: If I was able to, I would like to have all of my health care under the same hospital as it would be a lot more convenient for me and my family only having to travel to one hospital.
Callum’s Mum and Dad Steve and Michelle say: “Both of our sons Callum (14) and Joshua (16) have Eosinophilic Entocolitis and our daughter Alexandra-Grace (12) has Eosinophilic Colitis. Callum also has chronic fatigue, steroid induced cushings, delayed gastric emptying and slow transit.
Callum started artificial nutrition (AN) at the age of 5, a shock for the whole family as nobody had ever been on AN before. Callum started off with a nasogastric tube and then moved onto a PEG and then onto a Mic-key. We attend the local hospital in Cosham for his care, although we do have a wonderful community team where we live in Havant, Hampshire.
We entered a whole new world when we started out with AN and we felt isolated. At the time I could only find the Oley Foundation in the US and they put us in touch with PINNT. From joining PINNT we have always felt we had somewhere to turn to if we had a problem with - everyone has always been very supportive over the years. We attended the meeting at Portsmouth which was fantastic - we will be attending again.
When asked to write an article for PINNT’s magazine Online how could we refuse - it felt like we were giving something back for the years of support we have had. That is why we are also supporting PINNT’s awareness week.
My one wish: We would like all medical students, GPs and Nurses to be taught what a Gastrostomy is and how it works. Both Callum and Joshua have been asked numerous times what a gastrostomy is on admission to hospital, and when seeing new doctors!
BAPEN shares 100% PINNT’s ambition to improve the experience of all patients on artificial nutrition therapies and the support provided in hospital and at home.
Clinicians do not always have the same agenda or priorities as patients. We like to think we are doing everything in the patients' best interests, but often miss or fail to fully appreciate issues important for the patient. Better dialogue is important to improve mutual understanding.
Your PINNT leaflets are brilliant and just what is required to keep health care professionals on their toes.