"My cousin's end of life care"

About: City Health Care Partnership CIC / End of life care Dove House Hospice Hull Royal Infirmary / General surgery NHS Hull CCG

(as a relative),

My cousin suffered from Huntington's disease, and was in the final stages. He was admitted into hospital as he was bleeding from his behind. He was left in AU for 4 days with a catheter fitted, but no one explained why they had fitted it. On numerous occasions because of his involuntary movements it would get caught around his legs and he would pull on it causing excruciating pain.

He was admitted with the same condition on 3 more occasions. He had pulled out his peg whilst in hospital and they tried to reinstate it but couldn't. He was starved for a week and had a procedure to fit a nasal feed, only to be taken out the next day as they had fitted the wrong one.

An incident report was filed against the hospital and the nursing home he was in. I had to feed him in the end, to prove he could swallow. The hospital didn't believe me or the nursing home, until they saw it for themselves. He was then discharged with palliative care supposedly in place, as he would not be readmitted and his future care would take place in the nursing home.

The home contacted palliative care and was told they would not become involved until end of life. Shortly after he became very poorly, it was a bank holiday weekend, and basically he was left to suffer due to staff shortages across the board. A palliative doctor (who was amazing) came on the Tuesday and he was admitted to the local hospice on the understanding that another weekend was coming and he had already suffered too much.

I had read a story in the local newspaper about the care on a weekend being very poor and this swayed our decision to admit him into the local hospice, as we couldn't bear him any more suffering. We made the right decision, as the hospice was so caring, and supportive and most of all respected my cousin and gave him his dignity at his end of life. This care should be available in the community and the story that led me to write this is that please ask the question why it is not?

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Response from Angie Orr, Senior Operations Manager- End of Life Care, City Health Care Partnership

Dear Sutts

I am sorry to hear that you feel your loved one suffered at the end of their life and the care that you experienced in the hospital and the care home was below your expectations. Unfortunately we are unable to respond directly to these issues as we do not manage or deliver these services.

Please let me reassure you that palliative care is available to patients in the community during the working week and at weekends. Our community specialist palliative care team visit patients during the palliative phase of their illness and when they are at end of life.

Thank you for your feedback regarding our speciality doctor who responded quickly as soon as we received the referral to our service -we will pass your feedback onto them. I am also pleased to hear that he was able to access prompt admission to hospice care and that you feel your loved one died peacefully there.

Kind Regards

Angela Orr

Senior Operations Manager- End of Life Care

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Response from Hull Royal Infirmary

Thank you for placing your posting on the NHS Choices website. We are sorry to read of your recent experience and we will ensure that the staff concerned are made aware. If you would like to discuss this matter further with us, please do not hesitate to contact our Patient Advice & Liaison Service on (01482) 623065 or email on pals@hey.nhs.uk. If you would like to become more involved in decisions about local healthcare, we are recruiting members. By becoming a member you receive our quarterly newsletter, find out more about your local NHS and help us improve local services. You can also attend our ‘medicine for members’ sessions and respond to questionnaires. You don’t need any special skills or experience to become a member; you just need an interest in local health services. There is no commitment, you can get involved as much or as little as you choose. For more information please either email foundation.trust@hey.nhs.uk or telephone the Corporate Affairs office on telephone number (01482) 675165. Thank you once again for taking the time to provide us with your views on local NHS services. Kind regards, Patient Experience Department Hull and East Yorkshire Hospitals NHS Trust.

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