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Kick in the teeth for old Soldier
Four years ago my wife and I decided to move to North Lincolnshire for a quieter life and a better house. At that time all was well with my Father and Mother. On his first visit to us in his car he got lost and I had to go and direct him to our house. This was the first indication that all was not right. He had never had problems finding places before and I had given him detailed instructions.
His General Practitioner eventually referred him to see a Consultant Psychiatrist in Medway NHS Trust. He underwent a CT scan of his head that my wife and I paid to have done privately. He would have been forced to wait for a number of months for the NHS to carry it out. He also underwent an MRI scan, which was subsequently carried out by the NHS. He was getting very agitated by now and was also showing some aggression to my mother, so his consultant prescribed him Quetiapine for his agitation. Recent research has shown that these Neuroleptic drugs can shorten the lives of people taking them. After his scan results came back he was diagnosed with Alzheimer’s but he was never offered any of the medication available e.g. Aricept to help his distressing symptoms. My mother who is 83 was caring for him at this stage and it was becoming an increasing strain on her. She became unwell and her GP had her admitted into Medway hospital. With nobody able to care for my father at home, he came to stay with us while my mother recovered in hospital. He was fine for the first night with us but on the second and third nights he was having problems with his orientation as regards the toilet. I was not able to sleep and was feeling terribly stressed, as I was so concerned about his welfare. The whole family was consulted and it was decided that we would put him into a local Nursing Home for respite care until mum came home from hospital. This decision broke my heart at the time as it was the hardest thing I have ever had to do. I cry very rarely but was in tears the day we all came to an agreement to put him in a home. To see my fathers distress as I walked him down the corridor to his room in the Nursing home made me feel like a traitor, although in my heart I knew it was the right decision. I also bought him back home with us for a couple of hours every day after finishing work for the fortnight he was there to try and make the transition easier for him. My mother was diagnosed with an enlarged heart problem and we realised that the strain of looking after my father was not going to help her situation so we got in touch with Kent social Services. They carried out an assessment on my father on his return after also assessing my mother before leaving hospital. My father went into short term private respite in Medway before eventually being found a permanent place in a care home in Gillingham Kent where he now gets the 24/7 care he needs. The care home inform me that only one patient of theirs with Alzheimer’s disease is on medication for the symptoms and although my father has been reviewed by his GP he has never been referred back to the Psychiatric clinic for any effective treatment of his symptoms despite having lived in the care home for a year I am in the process of trying to get his medication reviewed, because he went into a care home his records were archived at the Psychiatric clinic he attended before going into care and he was then under the care homes GP. I have finally managed to get him referred back to the Dementia Clinic for an urgent review and am hoping for a positive result. I should not have to be phoning doctors and clinics and requesting a review for my father. His continuing care should be automatically carried out by the NHS despite his change of circumstances. I know he cannot be cured, but at least there is hope that he may gain some quality of life albeit for a short time if offered one of the Alzheimer’s medications. It angers me to have had to watch his mental decline, as I know he is a very proud man and liked to be Independent. This debilitating illness is robbing my father of his ability to communicate. He has lost his Independence and he is totally reliant on his carers to carry out many of the simple daily functions that we all normally do without conscious thought. For a man who has served Queen and country all of his life to be denied treatment that could help maintain his Independence and quality of life is a kick in the teeth by this government and an absolute disgrace for someone who is elderly and in need for the first time in their lives. Not only does he get swept aside as regards treatment but he also has to find £960.00 a month to pay for his care home fees although he does get some help with state funding. Many people have to sell their homes to pay for their care in their old age, something that should be fully funded by the NHS. One thing that Alzheimer’s can’t destroy is the love my father has for us, and the love we have for him. We see the joy in his face when we visit him and the tears in his eyes when we leave but there is an unspoken bond between us that can never be severed. Alzheimer’s drugs for early and late stage patients have been deemed too expensive at a cost of £2.50 a day by NICE (National Institute for Clinical excellence) and not cost effective. Because of my fathers predicament I have become a supporter of the Alzheimer’s society who are campaigning .for access to Alzheimer’s drugs for early and late stage patients. The Alzheimer’s Society has expressed its disgust at the NICE appeal panel’s rejection of the Alzheimer’s Society’s appeal on access to Alzheimer’s drugs. The panel have decided not to change the original guidance of the Appraisal Committee, stating that Alzheimer’s drugs should only be given to people in the ‘moderate’ stages of the disease, and not in the early or later stages. Thanks to the ruling in November 2006, many people in the early and later stages of Alzheimer’s disease are likely to be refused treatment. This decision could affect the lives of hundreds of thousands of people, as one in five of us will probably develop dementia at some point in our lives. The Alzheimer’s Society has decided to take part in a Judicial Review to challenge NICE in the High Court and have had support from the Media and are actively campaigning to raise funds for the fight. I have also set up a petition on the Number 10 Downing Street website and would be very grateful for your support. Sign up and Support the Petition Thanks for your support. Addendum From Dr Rita Pal (Editor) From Clinical Experience, Aricept has improved the lives of many people. It has maintained their independence for many years. This means the difference between admission to a nursing home and living in their own home or with their families. Having worked in elderly psychiatry in the past, I am of the view that the NICE guidance has been unjust and a complete travesty of justice. Many patients I have reviewed have benefited considerably from the anti dementia medication. Studies are often not a reflection of the population as a whole. It is vital to take individual cases and view the difference this drug makes. I therefore support the judicial review of the decision NICE. As an organisation in my view, it is often detached from real clinical psychiatry and deserves its title within the medical profession – NICE but Not So NICE. Again we see the quality of a person’s life tipped in favour of the financial aspects of the balance sheet something that is endemic in todays National Health Service. “Alzheimer disease (AD) is characterized by both cognitive and noncognitive symptoms that can lead to functional impairment, increased caregiver burden, and institutionalization. Pharmacologic therapies traditionally used to treat cognitive symptoms of AD may prevent and/or control many noncognitive symptoms as well. The acetylcholinesterase inhibitors (AChEIs) galantamine, rivastigmine, and donepezil have been shown to maintain or improve function for at least 1 year. They also have been shown to improve or delay the onset of neuropsychiatric and behavioral symptoms. These noncognitive benefits can impact greatly the lives of patients with AD as well as the persons who care for them” : Alzheimer Dis Assoc Disord. 2004 Apr-Jun;18 Suppl 1:S9 Given the current lack of other effective treatments for Alzheimer's disease, this trend supports the clinical benefits of these treatments with regard to this important health outcome Related Links 1. Royal College of Radiology Patient Leaflets on CT and MRI scans 4. MIND Guide to Dementia Medication 6. Exelon 10. Department of Health Response 11. Who Cares? Information and Support for Carers 12. Carers UK 13. Cross Roads 14. Direct Payments
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My
father joined the Royal Engineers as an 18-year-old boy. During his service
he rose through the ranks and was eventually offered a commission and
retired at the age of 55 as a Major M.B.E. During his service he had many
postings, India, Egypt, Malaya, Kenya, Northern Ireland and Nepal being
just a few of them. He is now an elderly gentleman in need of assistance
from the National Health Service. We outline our fight to obtain access
to basic medication that will help him lead a relatively independent life.
In
the following months his mental state gradually deteriorated, he lost
interest in reading, watching the television and even gave up his woodturning
hobby. Eventually he also gave up driving altogether. 