Joy Ford

Thank you for getting back to me. Just returned from visiting family, but happy to share I will make contact later in the week. Joy

Communication is one of the biggest problems, between medical teams for same patient, between Hospitals and GP surgaries, beteen carers and GPs even when you have registered as a carer. Also different computer aps with in all NHS, It was meant to make things easier, but patiants notes that folled a person from birth and death, but at least it followed you. Now our notes do not always meant up. Or a admin person enters on a GPs email address info from a hospital and the GP does not have time to read them all so they become lost not actioned. My husband was diagnosed with Pulmonary Fibroses, he already had vascular problems in his legs, so mobility was poor. He had just been discharged for hospital after it was hoped his T Cell Lymphoma (type of Blood cancer that affects the skin) was clear after five years of regular check ups. His lung problem we were told was terminal and he had between 3 to 5 years. We were told he was suitable for a medication trial from Musgrove Hospital, and we were to wait for appointment. Appointment did notcome through for over a year, during that time my husband deteriorated, oxygen was increased. He became more unwell and I noticed lumps coming up around his knee, as his carer I was concered they looked simular the the T Cell he had removed from his back. The GP first asked why my husband was in a wheel chair and what was he doing with the oxygen cylinder, We explained then mention the lumps on his knee, he took a look and said he did not know what it was, and would arrange for the district nurse to come in and dress it. I mentioned about the T Cell but was not listened to. Nurses came in twice a week to dress his leg, more and more lumps appeard and started to bleed and weep. The nurses became concered and photoed his leg to show the doctor as there was no diagnoses they worried they not be giving the right treatment. GP called and askd my husband what were all the lumps on his leg, when he said he didn't know, the GP asked how he was feeling, he said not so bad, his standard reply to anyone asking him. In the end I took a photo of the leg, and wrote to the dermatologist who treated his T Cell. We had an appointment with in the week, where T Cell Lymphoma was diagnosed. The lumps were cancerous tumours and not there were to many to treat by radiotherapy, which would have helped prolong his life. We were given an appoinment with Hematology, they were really helpful and gave a lot of advice. We had a copy of the letter sent to the GP, giving diagnoses and asking them to perscribe Oramorph for his pain, and also put End of Life care in place. I phoned the surgery every day for two weeks befor I had the medication for his pain. End of life care never happened, he died on 2nd of Jan 2023. Things would have been different if the GP had read the letters listened to the carer an knew a bit more about the person my husband was. Like many people in their 70s they don't want to make a fuss. It's not that he died, though ofcourse I wish it never happened, but the lack of support for him and me from the medical angle. All it needs is to be heard, and things explained when required.

I have taken time to go through this as a none medical person but use lived experience. It makes complete sense for both Coroners and Stastic groups to work together and use the same language and codes. Funding is needed to this very important information, how can anyone start to change with out the full information, on all unexplained deaths, to work out how to prevent as many as possible.