Hello Everyone
We have updated our petition page as our original piece that we wrote before we launched the petition in September 2023 was out of date. To read the updated version go to our petition page: https://chng.it/CGMQTDVvRb
Below is our original petition page. We wanted people to still be able to read our original petition page, so we decided to put it in this update.
Thank you so much to everyone who has signed and shared the petition. Also, thank
you very much to everyone who has chipped in to promote the petition. It is very generous of you and it makes a big difference. Thank you for your supportive comments. Thank you to everyone who has contacted East Sussex Healthcare NHS Trust (ESHT), MPs, media etc about Karen's situation. It is all helpful and much appreciated by us.
Please keep sharing this petition and telling people about Karen’s situation.
Thank you to everyone for your support.
Best wishes to you all.
Karen, Heather & Michael
Our original petition page.
Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings.
Started 14 September 2023
Petition to:
• Steve Aumayer - Acting Chief Executive - steve.aumayer@nhs.net (East Sussex Healthcare NHS Trust - ESHT) and 2 others
• Directors - ESHT
• Hospital Management
Conquest Hospital, Hastings & Eastbourne District General Hospital
Started by Michael Gordon
Please sign this petition to try and save Karen Gordon’s life. She is a 37-year-old lady who has very severe Myalgic Encephalomyelitis (ME). Karen lives in East Sussex, South East England.
Karen is currently at home suffering from life threatening dehydration and malnutrition. She has lost a lot of weight. She is getting thinner and thinner. Karen is scared that she is going to die from dehydration and malnutrition. Karen does not want to die.
Karen needs the East Sussex Healthcare NHS Trust to provide I/V feeding (TPN) and I/V fluid at home without delay.
ME/CFS is classified by the World Health Organisation as a neurological condition.
Karen is totally bed bound and cannot eat or drink.
The ME causes many symptoms including generalised pain, abdominal pain, headache, nausea and vomiting, fatigue, and hypersensitivity to sensory stimuli including, light and noise. She has to keep her eyes covered.
Karen is intelligent and has many interests. She loves spending time with her two cats and enjoys other things including, receiving cards and letters, and having things such as some newspaper articles and updates on some of the many animal charities that she supports read to her a bit at a time when she is able.
Karen has had ME since she was 10 years old. She has been tube fed for 19 years mostly at home. In the last two years her ME health has become worse, causing more severe nausea and vomiting and severe abdominal pain leading to more feeding and nutritional difficulties.
Karen is only managing a total of around 800mls - 900mls of feed & water altogether each 24 hours, and sometimes it is much less than this. On average Karen's calorie intake is around 600 calories each 24 hours. ME is a fluctuating condition and some days she is not able to manage any feed at all and very little water because of the increase in the severity of her symptoms.
Heather is Karen’s mother and full-time carer. Karen would not be able to manage physically or emotionally without Heather by her side 24/7 when she is in hospital, giving her the one-to-one care and support, advocacy and help with communication that she needs.
Karen needs to be given a side room for the duration of each hospital admission to help provide the best environment possible in hospital for her with her very severe ME. The National Institute for Health and Care Excellence (NICE) Guidelines on ME recommend this. Consultants at both local hospitals have supported Karen’s need for a side-room. Two ME specialists have also advised the Trust that Karen be given a side-room. Despite these things, the Trust and senior nursing management refer to Karen’s need as a ‘preference’ and now won’t give her a side-room.
Being in a 6-bedded bay is very unsuitable for Karen and causes an increase in symptoms, unnecessary suffering, deterioration of the ME and it can cause a relapse of the ME and it is life-threatening. The sensory stimuli and busyness around her in a bay are overwhelming and exhausting for Karen and cause her more severe pain. Rest and sleep are particularly important for people with ME and they are needed for energy management which the NICE guidelines advise. In a bay, Karen gets hardly any sleep or rest due to the disturbance.
For 18 years, Heather stayed with Karen 24/7 giving her care and support each time she was in hospital on the urology unit and other wards and the hospital accepted that Karen had a clinical need for a side-room. Both these things have been usual practice until earlier this year.
Karen had TPN for 14 months during a hospital admission which ended April the 21st 2023. The doctors said that Karen needed the TPN and I/V fluid at home. We all agreed with this. The Trust said that Karen could only access them by going to stay at St Mark’s Hospital in London, which is around 100 miles away, for a minimum of 6 - 8 weeks, and that she would have to go through their assessment while there. Some other NHS hospitals do not require patients to go through this process. Going to St Mark’s would be detrimental to the ME. Karen was asked to sign a St Marks admission form stating she would not be given a side-room and was told that St Mark’s said that her full-time carer, Heather, would not be allowed to stay with her 24/7.
The Trust stated in a letter to Karen, dated the 14th of March 2023, that ‘It is important to understand that you require a minimum of 500mls of enteral feeding per day when you are at home. If you are unable to tolerate this and have declined St Mark’s referral there is no alternative that the Trust can offer.’
Karen couldn’t be referred to St Mark’s because of the conditions that she was told she would have to accept, although they didn’t meet her needs. As Karen had been told that St Mark’s would not meet two of her major needs it seemed unlikely that they would accommodate her other special needs that she has because of the very severe ME either.
Karen couldn’t agree to the referral so the Trust stopped the TPN and discharged her.
No patient should have to die because due to their illness they cannot follow the usual practice of their NHS Trust. The Trust should find a way for a patient to be given what they need in a way that is suitable for them.
Karen says the Trust have dumped her and do not care about her treatment at home or in hospital and that they think her life is not worth anything.
The Trust and senior nursing management have shown cold uncaring attitudes, a lack of respect and compassion and disbelief of Karen’s ME illness, its symptoms and how it affects her. Their attitudes and actions have caused Karen intense emotional and physical stress and suffering and make her feel scared about going back to hospital.
Karen's most recent hospital admission was the 17th of July to the 4th of August 2023. Karen was admitted to Conquest Hospital Hastings because her PEG-J feeding tube was blocked. The hospital management were insisting that Heather leave Karen from within minutes after Karen was admitted. This caused Karen huge stress, distress, fear and anguish as Karen knew she would not be able to cope physically or emotionally without Heather. It took 17 hours until after 10pm a site manager said Heather could stay with Karen for that night. There was no reassurance that Heather would be able to stay for the whole of the admission. Karen was in a 6-bedded bay throughout her hospital stay. Being in a bay increased Karen’s ME symptoms. Her nausea got worse and she started vomiting repeatedly. She had more severe pain. Her exhaustion became worse. During the admission Karen was not given TPN. After the PEG-J tube was unblocked, Karen was not able to reintroduce any PEG-J feed during the admission as being in a bay was making her so much more unwell. Karen had no feed of any kind, for 23½ consecutive days – 1½ days before admission, 18 days in hospital and 4 days at home after discharge.
Two tests in the last month have shown that Karen is dehydrated. But she has not even been given a few days of I/V fluid at home to help her during this time by the Urgent Community Response / Virtual Ward teams.
We call on the CEO and Directors of East Sussex Healthcare NHS Trust and the management of Conquest Hospital Hastings and Eastbourne District General Hospital:
1) To make arrangements that are suitable for Karen – including 3 and 4 below – to start TPN and I/V fluid without delay. We expect this would initially be at Conquest Hospital and then for them to continue at home.
2) To make special arrangements that are suitable for Karen to facilitate Karen to have home TPN and I/V fluid without Karen having to go to St Mark’s Hospital and without all of the usual assessment processes, as she is unable to do them because of the very severe ME.
3) To accept that Karen needs her mother, Heather, her full- time carer and advocate, to be with her 24/7 while she is in hospital giving her one-to-one care and support throughout each admission.
4) To give Karen a side-room for the duration of each admission because of her very severe ME.
5) To treat Karen with compassion and respect.
Please sign this petition to try to save Karen Gordon’s life by getting her TPN and I/V fluid soon, get them continued at home and to get her the conditions she needs when in hospital.