Hello everyone.

The IV feeding is going ok. Karen is still very thin though. The hospital is still not weighing Karen and tracking her weight on a weigh bed. We are very concerned about this. Karen has now been in hospital for 7½ weeks, but she has still not been moved to the Gastroenterology ward that has some rooms large enough for Karen to be on a weigh bed so that her weight can be tracked. The management seem determined not to move Karen to a more suitable room on the main gastroenterology ward. We continue to ask for Karen to be moved as it is so important.

Karen has had a particularly difficult few weeks.

On Tuesday the 30th of January at around 5:00pm, the balloon that held one of Karen’s tubes in place burst. This drainage tube became very unstable and was at high risk of falling out.

When Karen has this tube put in / replaced she needs a senior specialist doctor and specialised equipment for this to be done. At Eastbourne District General, our local hospital, there is a large unit with specialised equipment readily available and specialist doctors. Yet last year, the hospital management told us that Karen would have to go to Conquest Hospital 20 miles away for her Gastro admissions which doesn’t have the specialist doctors and equipment 24/7 that Karen needs to replace this tube.

Nearly 3 days went by without a specialist consultant coming to replace the tube. During this time Karen was very scared that the tube would fall out, creating a more urgent situation as within an hour Karen would be in a lot of severe pain and distress and there would be no way of getting help quickly.

Karen couldn’t be moved to lie on her side as this could have dislodged the tube, so she was uncomfortable and at risk of getting bed sores, especially as she is terribly thin and bony.

There was a lot of talking about possible arrangements. Karen found all the discussions tiring. Karen was told several times that she might have to be taken to Eastbourne DGH to have the tube changed / replaced. This was very stressful for her. This would have been completely unsuitable for Karen with her very severe ME. It would be unacceptable for Karen to have to travel 20 miles each way to get the tube changed. If the tube had already come out there would be delays because of waiting for transport and travelling time whilst Karen was in severe pain and acute distress.

On Thursday morning Karen and Heather asked to speak to a site manager as the ward matron was not working that day and Karen and Heather wanted to speak to someone who could help arrange for the tube to be replaced as soon as possible that day. Six hours later they were told that a site manager would not be coming to see them and that a Head of Nursing for the ward would come instead. The Head of Nursing did not come to see them until the next day and by then arrangements had been made for Friday afternoon.

On Friday the 2nd of February a specialist consultant from Eastbourne DGH did a clinic at Conquest Hospital. In the afternoon he came to replace Karen’s tube. He did not bring one of the important pieces of equipment, so it was a particularly anxious time for Karen as once the old tube was out, if anything went wrong - as it has done before - the tube might not be able to be replaced without using the missing piece of equipment.

The delays during the 3 days and the way that the situation was dealt with caused Karen unnecessary suffering and stress and was bad for the ME, causing exhaustion and worsening of the symptoms during that time and also in the days afterwards.

We were all concerned and apprehensive about Karen being taken away from the service that the Eastbourne DGH has - rightly so, as has been proven.

On Wednesday the 31st of January Karen got a sore throat and a cold which has made her more poorly.

It is planned that we will we have a phone call with a doctor from St Marks soon. We are anxious about the call as we need to get Karen access to home IV feeding.

Thank you to all of you who have signed and shared the petition. Thanks also to those of you who have chipped in to promote the petition and / or left supportive comments.

Please continue to tell people about this petition and continue to share it on-line.

Best wishes to you all.
Karen, Heather & Michael