Charity launch first tube feeding awareness week to help improve local services (5-11 August 2013).
PINNT launches Quality of Life On-Line home artificial nutrition week
A charity working to improve the level of support for those who are fed via artificial nutrition says hospitals need to do more and listen more.
PINNT (Patients on Intravenous and Naso-gastric Nutrition Therapy) is launching the first ever UK awareness week (5-11 August 2013) to try and emphasise the issues of tube feeding. The aim is to create consistent levels of care in all UK hospitals and ensure health care professionals work in partnership with patients and carers who really understand the challenges faced when feeding via a tube at home.
In November 2012 the National Institute for Health and Care Excellence (NICE) released the Quality Standard for Nutrition Support in Adults. It claimed patients should be put at the heart of all that the NHS does.
At the time PINNT said they welcomed the findings, Richard Shawyer, Vice-Chair and spokesperson said From the patients perspective, we hope the new report will provide an added impetus to improving the quality of life experienced by all on artificial nutrition (AN).
The Quality Standard flagged a number of issues including the importance of training patients, their carers and families to be able to use at home therapies effectively, with patients enabled to recognise when to seek help, whilst also making the clear promise that the patient must be put at the centre of care by doctors and the whole healthcare system.
This is an issue one of PINNT s members is acutely aware of: While I have regular check-ups and access to the right people often I feel although I am speaking I am not being heard. I'm often swayed by what they want me to do, or what works for other patients, I leave regretting that I wasn't a little more assertive. It's difficult with on-going care to sometimes push for what I want. I'm happy to try things and admit when they aren't successful - I just want the chance to make choices about my care.
Over a year before the report was released PINNT recognised more needed to be done and has spent the past 18 months setting up support groups around the country. Chair of the charity Carolyn Wheatley, who is herself a long-term AN patient explains more:
PINNT sets up local support groups usually in co-operation with hospitals and healthcare staff and led by patients and carers or families parents. So far the charity has helped start over 10 groups, with the most recent in Nottingham. The idea is to get patients and their carers talking to each other and helping them to realise they are not alone.
One such hospital that is already seeing the benefits from a PINNT support group is Southampton. Dr Trevor Smith is the Consultant Gastroenterologist at Southampton General Hospital and says: We are certainly experiencing the benefits of the PINNT meetings. Patients with complex health issues requiring artificial nutrition can often feel very isolated, but the group provides an opportunity for patients to meet others with similar health and treatment issues and simply chat to each other. It has also been a positive experience for our staff as patients themselves often come up with unique solutions to problems which we do not fully appreciate. Hearing about these has provided us with fascinating insights into what it s like to be a patient 24/7/365.
By launching the awareness week, PINNT is continuing their work to highlight the issues around tube feeding. Often patients on AN find it difficult to get help from their local hospital. One person, who successfully feeds at home says Much of the time things go well; I always remain observant in relation to changes that could potentially lead to serious complications. On the occasions when I need expert advice from my hospital I find it difficult to locate the right people especially outside normal working hours. I have an on-call number and can speak to the dedicated ward but often I am left waiting for a call back, usually because they are busy. I am often told to go to my local A E, which can be more worrying than helpful as they do not fully understand my feeding and I find myself trying to get the right things done without success, it can become a huge challenge.
This patient is certainly not alone. PINNT receives around 1300 emails via their website a month from patients asking for help, whilst their helplines receive around 2500 calls a month.
It's hoped this first UK awareness week will act as a tool to keep up the momentum from the 2012 NICE Quality Standards with PINNT are working with professional groups to improve dialogue and understanding. The week has the support of the Chair of the NICE Quality Standards committee responsible for producing the Standards, Professor Marinos Elia.
Professor Elia says: 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 PINNT 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.
Carolyn sums up the overall objective from PINNT s viewpoint:
We want to see a consistent positive patient journey for all without politics or wranglings in relation to cost or accessibility.
During the Awareness Week (5-11 August), PINNT will be uploading two new stories of adults and children on artificial nutrition every day accessed via the home page www.pinnt.com.
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