Husband found soaked in his own urine in a hospital bed... why is there no co-ordination and on-going care??
Why, oh why am I chasing my own tail like the White Rabbit, trying to co-ordinate all the various appointments with multi disciplinary specialists that my poor husband has had to endure over these last nine months of serious illness? Why is there not someone who could co-ordinate things for me and my husband and for other patients who also suffer multiple health problems? ….. Let me start at the beginning:- Towards the end of 2009 hubby was having incontinence problems, but this was being attended to. However the incontinence had worsened by June 2010, when we had to visit South Africa on the death of his mother. On 7 June 2010 in SA he had a seizure which resulted in a head injury and multiple fractures of his right leg. He had a tibial nail and screws inserted in hospital in SA. Three days after discharge he suffered a bout of cellulitis in the leg wound, and back to hospital he went. After 7 weeks we were allowed to fly home, as the leg was (we thought) healing nicely. Two weeks after our return hubby was becoming weak, continually sleepy and experienced loss of appetite. Our GP referred him to PAH for investigation. He entered hospital on 11 August, 2010, to remain in PAH until 29 September 2010, when he was admitted to Basildon CTC with endocarditis and for aortic valve replacement, after also developing ESBN urinary infection somewhere along the line whilst at PAH, exacerbating his incontinence problems.. AVR took place on 4 October, and went well but on 11 October he suffered cardiac arrest due to cardiac tampanade. He remained in Basildon until 25 October. Two weeks later he was back in PAH for cellulitis. On 30 November he had a CT chest at Basildon which went unreported for two weeks. On 16 December we were phoned by Basildon to get him in urgently for cardiac tampanade aspiration. He remained in hospital until 28 December 2010. His cardiac improvement is progressing well, however he has bacterial infection around the metalwork in his leg, and in the screws, one at least of which is broken. So on 14 April, he will have the metalwork removed at PAH. That’s the potted version. Throughout and in between all the hospital admissions, I have had to juggle the following appointments etc., Orthopaedics Neurology Cardiology PAH and Basildon CTC Ortho Physiotherapy Neuro physio Urology Vascular Cardiac Rehabilitation (cancelled) Radiology District Nurse Prostate Nurse Specialist Transport to and from appointments Issuing and ordering of medication Believe it or not on several occasions I have had double date appointments, so had to cancel and re-schedule appointments.. I have had to cope with hubby’s severe incontinence, making his life and mine a misery. I have had to beg for assistance for him for this problem, and only got a response when I threatened to cut off the offending organ. Then things moved quickly via the GP and District Nurses. However he seems to have been abandoned by Urology Department. The onus has been on my shoulders to prioritise the health problems. When we came back from SA it was orthopaedics for the fractured leg. However events overran us as that was put on a back boiler whilst his cardiac problems were attended to, to the detriment of his leg, which I firmly believe has hindered the recovery of the bones. He is on 13 types of medication every day, a total of 27 pills and tablets daily. The list could go on and on, I could tell you things that would make your hair stand on end about what has occurred and what we have experienced within the NHS since the start of this whole sorry mess. From finding him totally soaked in urine in his bed, both on a normal ward (in both hospitals) and also when he was barrier nursed to informing staff he was developing bed sores. I have had to watch a strapping man in the prime of his life fade physically and mentally before my eyes into a skeleton with no will to keep fighting one medical problem after another. I am eternally grateful for all that the NHS has done for hubby, but I have been in the depths of despair trying to juggle all that I have had to cope with, and will still have to for months to come. Why is there not someone or a department who could take overall management of his case and others like him. I need assistance, but where do I go to get it. I cannot cope much longer. I also work fulltime. I am exhausted mentally and physically the whole time. I have a household to run plus the personal care (bathing and changing catheter valves and bags, ordering, dispensing and stocktaking medicines etc) for husband as he cannot do this himself. Again, I ask, why oh why is there not a team at the hospital who can take over management of this type of case. The only way I can manage is to forget about him while I am work, otherwise I would be a basket case by now. This is in no way a complaint, I would just like those who run the hospital to realise that families of patients suffering multiple health problems should have a back-up team to assist in the immediate and on-going care for patients with multiple health problems.