#thisisPhil

I am a PINNT Ambassador and a Home Enteral Nutrition Service (HENS) dietitian in Leicester, and a keen football fan and supporter of Wrexham. I have the privilege of seeing people at home who have enteral tube feeding and know how isolating it can be for them. It is important to remember that they have a common treatment but each one has different expectations and abilities. I am also a PINNT Ambassador.
What made me start a group? In 2014 we set up a patient focus group within our service, and one of the key themes was how our patient group felt they would benefit from the opportunity to meet other people who live with artificial feeding or support a family member. Around the same time, I read an article about setting up a PINNT group and thought this was the perfect opportunity to meet the need identified by our patients. I became a PINNT Ambassador in 2014 and attended a meeting and was surprised at the time to be one of only two dietitians who were involved in setting up groups. Starting a group from scratch was quite a scary prospect, but PINNT supported me, and we started in 2015, running two groups a year. I was also proud to be the first group to restart following Covid.

Why do I do it? I believe PINNT groups are a fantastic opportunity for patients and carers to meet and support each other. People talk about their challenges in relation to artificial feeding and solutions they have found from their own experience. Many of our patients are keen to talk to others about how they have not let artificial feeding stop them living a normal life, telling their stories about abseiling and water skiing. This has inspired other members who have felt that artificial feeding has restricted them. It is also a great social event and a chance to have a chat about anything. People also feel supported knowing that nobody will bat an eyelid if they are feeding by a syringe or pump during the meeting. 
 
As a health professional I also gain a lot. It gives me a very different perspective to see patients outside my clinical role and listening to conversations helps me really understand what my patients’ priorities are. The fact people come back on a regular basis also gives me some satisfaction that we must be doing something right!

The pros and cons of a meeting. Before I set up the Leicestershire meetings it’s safe to say I wasn’t a natural organiser and was happy to be told by others where to go and when! It therefore forced me outside my comfort zone, which isn’t necessarily a bad thing! What I sometimes find hard are the things that you can’t control, such as venue bookings falling through, speakers having to cancel etc. However, we have learned that we can adapt
when needed and PINNT are very supportive when there are problems. The main benefit is the feedback from the patients and the fact that they tell you that meeting is making a difference. Friendship groups have formed outside PINNT groups, and I am glad to have played a part in that.

How would a fellow dietitian benefit from starting a PINNT group? I feel dietitians are in such a good position to start a PINNT group; we know the patients, so are in a great position to be able to coordinate the events. As I said previously, I was surprised when we started that there were so few dietitians involved in this way, and think it would be fantastic if more people throughout the country had access to a local meeting. If you can get a
meeting going in your area it will have a huge benefit to your patients. I know the prospect of starting something like this can be overwhelming and you will not know where to start. 

The important thing here is that PINNT will support you every step of the way to get the meetings started. I have also supported Nottingham in terms of setting up a group as a dietitian, and would be happy to help if anyone wants some more information. I can also share things like our invitation so you wouldn’t need to start from scratch.

My experience is that there is a definite demand for these meetings and patients will benefit and come back. My last piece of advice would be contact PINNT and give it a go, you won’t regret it!