"Malnutrician and muscle wastage due to gerd and H. Pylori"

About: Lincoln County Hospital Lincolnshire Teaching PCT

(as the patient),

This illness started in June 2010 and I have progressively deteriorated.

I was diagnosed with Gastroesophageal Reflux Disease (GERD) after repeated tests, a colonoscopy and 3x upper GI series, paid for privately to speed things up. I then had the same repeats on NHS, but no treatment, no sorting out the medical diseases that caused massive weight loss of 35.74% of my body weight and rendering me housebound.

I desperately need treatment before it is too late. I have not been able to eat a meal for 15 months. No tests have been suggested to track my deteriorating health, and NICE's ''must'' guidelines have not been followed. I was a size 20 but now skeletal and size 6, and have repeated falls, so need to use 2 sticks to get around the home and housebound as i cannot always get hold of one of my carers. I am looked after by the social services adult care team, who are great, but the medical side seem to treat me as if i do not exist... Why?

I am now so depressed at losing my looks and body that i feel suicidal, but i hold back as they would have won. I need tube feeding as i do not fit the criteria for sip feeds, and as my stomach does not empty correctly i have no appetite due to the stomach not sending a message to the brain. But after waiting a full year for a dietician, i am given enough sip feeds for 3 days and seen 3 months later. The lack of speed is detrimental to my health. There are various people involved in tests, but at no time have they got round a table to see where the other is going. I wish i could say more but it may become public.

I am now in the care of lincs nhs trust and it is doing nothing at all for me. I am now desperate for treatment and trawling nice, and any site like this hoping for advice. Thanks.

After a terrible episode, i called 999 as i could not move with severe muscle spasms, (due to the wastage) but was told that i ''did not fit the criteria for an ambulanceā€. That beggars belief. How on earth can i make them help me? I have just got my state pension and live alone with no family near me, i am considered 'at risk' by social care, but how do i get admitted and assessed properly? If you knew that i would be happy.

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Responses

Response from Jennie Negus, Deputy Director of Patient Services, United Lincolnshire Hospitals NHS Trust

picture of Jennie Negus

I am very sorry that you have had such a difficult and distressing time and also extremely sorry that it has taken us so long to respond to your story here. I hope that you have, in the meantime been able to get the help that you need. It is difficult for me to respond here to the issues you have raised but if you wish for me to investigate further please contact me via patient.involvement@ulh.nhs.uk. Thank you for taking the time to give your feedback; positive and negative feedback is extremely valuable to us as we work hard to build on what is working well and further develop and imrpove our services.

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