** Trigger Warning: Very upsetting content **
Karen Gordon who has very severe ME, has been in hospital for over two years. Her family have been campaigning for her to be able to receive TPN (intravenous nutrition) and IV fluids at home, allowing her to return home with necessary medical intervention to maintain her fluid input and nutritional needs.
Background from Gordon family petition
The Gordon family report that East Sussex Healthcare NHS Trust (ESHT) is insisting Karen attend St Mark’s Hospital for assessment for possible home TPN setup. However, because of Karen’s very severe ME, the family are concerned that travelling to and staying at another hospital could cause a serious deterioration or relapse in her condition, potentially with life-threatening consequences.
The Gordon family has recently provided an update on Karen’s health, as well as correspondence involving their solicitors and ESHT. Using information from the family’s public update, we have summarised the main points below.
You can also sign the petition below to support the family’s campaign.
The Gordon family update – AI Summary (checked for accuracy)
- Karen has now been in Conquest Hospital for 2 years and 8 months and has been particularly unwell with severe ME in recent months, with frequent crashes, vomiting and extreme exhaustion. This has been triggered in part by the recent heatwaves, and also by other events as detailed.
- Her chronic anaemia has worsened. Her haemoglobin dropped to 65, its lowest ever, so she needed her 4th blood transfusion on 29 August.
- Her Hickman line broke in June, meaning she was without TPN (IV nutrition) for three weeks. This caused further weakness, weight loss and repeated low potassium levels.
- Replacing the Hickman line was cancelled twice before eventually being done on 24 June. The procedure and anaesthetic caused a significant worsening of her ME and pain, and there were complications with the wound, although it eventually healed.
- Hospital disruptions, including being moved rooms for noisy maintenance, have repeatedly caused significant ME crashes.
- Karen and her family are also continuing to deal with legal correspondence from East Sussex Healthcare NHS Trust regarding her care. They say the Trust continues to consider discharging Karen without TPN if she does not agree to transfer to St Mark’s, which they believe would be life-threatening.
- A catheter change in August also triggered another severe ME crash and vomiting.
- Karen turned 40 on 17 August.
- The family are extremely grateful for everyone supporting and sharing the petition, and are asking people to continue spreading the word.
Sign the petition
Please keep sharing this petition and telling people about Karen’s situation. Thank you to everyone for your support.