When serious illness strikes you or a member of your family, you find suddenly that you have entered a strange and perplexing world in which you barely understand the lingo or the system and where no one seems to have the time to explain any of it to you. The medical profession carries on in its own way, entirely forgetting that they are dealing with and caring for humans – not numbers. It is just like walking through C. S. Lewis' wardrobe into Narnia.
The illness "journey" (as we now have to call it) offers up "pathways" (another word which has been ludicrously hijacked to make the "journey" seem less frightening) along which you find yourself propelled. This is bad enough for patients with physical illnesses, but when the diagnosis is a form of dementia, the patient may well have been diagnosed late and so it is the family who are left to weave their way through the system, solve the problem of the lingo and learn to cope with feelings of loss and heartbreak as the person they once knew so well slips beyond their grasp.
For the family of a dementia sufferer, there are questions beyond numbers. What form of dementia is it? Is there medication which might slow down the symptoms? Either way, what is the prognosis?
How will the illness develop? Will the patient become violent? How do we keep the patient safe? Is the GP taking the case seriously – far too many people are not being diagnosed – and is the GP prepared to offer support? Can the dementia patient stay at home? Would a residential home offer a better quality of life? Would we be able to cope with the guilt of not looking after a family member ourselves? Could a member of the family accept the patient into their own home? What is the role of the social services – will three 10 minute visits every day go anywhere near alleviating the family's worry? Should someone give up their job and look after the dementia patient?
The questions circle around and round. Yet, if the GP or the Consultant who diagnoses the condition, pointed the family in the direction of Dementia UK's Admiral Nurses, so many of the family's questions would be answered immediately and the "journey" now being undertaken would not be so lonely.
The problem is that there are far too few Admiral Nurses and the name is not widely known – although, of course, it should be known by the medical profession. However, even if there is no Admiral Nurse in your geographical location, the medics could at least suggest Admiral Nursing Direct's telephone help line. This is staffed by experienced Admiral Nurses and offers practical advice and emotional support to people affected by dementia. I suspect that too many GP's are not bothering with this support service any more than they bother with the cancer support services. However, the time has come when they will have to bother – the NHS is overwhelmed with patients of all kinds and no longer offers any kind of emotional or practical support.
In my last blog post I asked if any readers had experienced the help of an Admiral Nurse. I received many emails – all of which could not praise or thank enough the Admiral Nurses who had been their "advocate and mentor"; had "liaised with other health professionals on behalf of the family"; had "supported the whole family and acted as a sounding board" – never forgetting the dementia sufferer at the centre of their work.
Wendy wrote: "My Admiral Nurse says that when the time comes to consider residential care for my Mother, the Nurse and I will make that decision together. She is a voice of calm who tells me not to feel guilty when I get irritated when Mum is having a bad day. Not being a family member, her view is unclouded by emotional involvement and when I tell her about something new that Mum has done, she has always heard it before!"
Francesca wrote: "Our Admiral Nurse facilitated the pathway in pulling together the team of people providing care and benefits for my Mother. In terms of practical support, I was able to ask questions and to learn more about the type of dementia (vascular) my Mother was suffering from, the medication she had been prescribed and its possible side effects, how to deal with challenging behaviour and where to find the appropriate care home facilities. However, the most important aspect for me was having a knowledgeable and caring person to share my concerns and feelings with at such a stressful time."
The last point made by Francesca is very pertinent because not every member of the family can handle such a tricky situation and, very often, goes into total denial – thus making a tragic and stressful situation into an even more complex one, as family disagreements take their toll.
So – who funds these wonderful Nurses? I asked Dementia UK and this was the answer:
"Admiral Nurses are supported by Dementia UK. The charity works with NHS Trusts and other not-for-profit organisations- such as Making Space, Age UK and the Royal British Legion – to set up the services. It costs £80,000 per year for an Admiral Nurse – £50,000 for the salary (the NHS standard wage for someone who is as highly skilled as Admiral Nurses need to be) and £30,000 for the Admiral Nursing Academy costs, Pioneer work and other overheads. Dementia UK provides the £30,000 needed to train a Registered Mental health Nurse to become an expert in Dementia care and the salary is paid by the NHS or other not-for-profit organisations. Sometimes Dementia UK bump start the first year's salary. Increasingly, Dementia UK relies on donors to play a big part in funding Admiral Nurses – sometimes The Health Lottery or BUPA has financed the salary of an Admiral Nurse."
At the moment, there are only 85 Admiral Nurses in the UK and, clearly, with cases of dementia now topping 800,000 in England, many more of these qualified Nurses are – and will be – needed. In her email to me, Francesca posed the question "Would it not be better to invest the £2.4 million – set aside for the Dementia Friends Initiative – in the recruiting, training and expanding the network of Admiral Nurses?"
She has a good point and her concern as to how the Dementia Friends will be monitored, in order to protect elderly and vulnerable adults, is very valid. After all, as we have seen recently, where there are children, paedophiles infiltrate – and, following far too many examples of the abuse of the elderly in their homes, care homes or hospitals – it is obvious that very stringent checks will need to be put in place to prevent the equivalent happening to people at the other end of the age spectrum.
To find out if there is an Admiral Nurse in your area, please ring 0845 257 9406 (phones are answered Tuesdays-Thursdays 11am-8.45pm and Saturdays 10 am-1pm) or email direct@dementiauk.org
For Christmas cards or to donate to the charity, please log on to www.dementiauk.org
If you are a carer for someone with dementia, you might think about joining Dementia UK's "Uniting Carers", which is an involvement network of family carers of people with dementia. The aim of the network is to give carers the opportunity to raise awareness and increase people's understanding of dementia – and find support from others in the same situation. Click on the link on Dementia UK's website.
Those with dementia have complex needs and the benefit of an Admiral Nurse at your side to make the "journey" clearer – and less like travelling through Narnia – knows no bounds.
The illness "journey" (as we now have to call it) offers up "pathways" (another word which has been ludicrously hijacked to make the "journey" seem less frightening) along which you find yourself propelled. This is bad enough for patients with physical illnesses, but when the diagnosis is a form of dementia, the patient may well have been diagnosed late and so it is the family who are left to weave their way through the system, solve the problem of the lingo and learn to cope with feelings of loss and heartbreak as the person they once knew so well slips beyond their grasp.
For the family of a dementia sufferer, there are questions beyond numbers. What form of dementia is it? Is there medication which might slow down the symptoms? Either way, what is the prognosis?
How will the illness develop? Will the patient become violent? How do we keep the patient safe? Is the GP taking the case seriously – far too many people are not being diagnosed – and is the GP prepared to offer support? Can the dementia patient stay at home? Would a residential home offer a better quality of life? Would we be able to cope with the guilt of not looking after a family member ourselves? Could a member of the family accept the patient into their own home? What is the role of the social services – will three 10 minute visits every day go anywhere near alleviating the family's worry? Should someone give up their job and look after the dementia patient?
The questions circle around and round. Yet, if the GP or the Consultant who diagnoses the condition, pointed the family in the direction of Dementia UK's Admiral Nurses, so many of the family's questions would be answered immediately and the "journey" now being undertaken would not be so lonely.
The problem is that there are far too few Admiral Nurses and the name is not widely known – although, of course, it should be known by the medical profession. However, even if there is no Admiral Nurse in your geographical location, the medics could at least suggest Admiral Nursing Direct's telephone help line. This is staffed by experienced Admiral Nurses and offers practical advice and emotional support to people affected by dementia. I suspect that too many GP's are not bothering with this support service any more than they bother with the cancer support services. However, the time has come when they will have to bother – the NHS is overwhelmed with patients of all kinds and no longer offers any kind of emotional or practical support.
In my last blog post I asked if any readers had experienced the help of an Admiral Nurse. I received many emails – all of which could not praise or thank enough the Admiral Nurses who had been their "advocate and mentor"; had "liaised with other health professionals on behalf of the family"; had "supported the whole family and acted as a sounding board" – never forgetting the dementia sufferer at the centre of their work.
Wendy wrote: "My Admiral Nurse says that when the time comes to consider residential care for my Mother, the Nurse and I will make that decision together. She is a voice of calm who tells me not to feel guilty when I get irritated when Mum is having a bad day. Not being a family member, her view is unclouded by emotional involvement and when I tell her about something new that Mum has done, she has always heard it before!"
Francesca wrote: "Our Admiral Nurse facilitated the pathway in pulling together the team of people providing care and benefits for my Mother. In terms of practical support, I was able to ask questions and to learn more about the type of dementia (vascular) my Mother was suffering from, the medication she had been prescribed and its possible side effects, how to deal with challenging behaviour and where to find the appropriate care home facilities. However, the most important aspect for me was having a knowledgeable and caring person to share my concerns and feelings with at such a stressful time."
The last point made by Francesca is very pertinent because not every member of the family can handle such a tricky situation and, very often, goes into total denial – thus making a tragic and stressful situation into an even more complex one, as family disagreements take their toll.
So – who funds these wonderful Nurses? I asked Dementia UK and this was the answer:
"Admiral Nurses are supported by Dementia UK. The charity works with NHS Trusts and other not-for-profit organisations- such as Making Space, Age UK and the Royal British Legion – to set up the services. It costs £80,000 per year for an Admiral Nurse – £50,000 for the salary (the NHS standard wage for someone who is as highly skilled as Admiral Nurses need to be) and £30,000 for the Admiral Nursing Academy costs, Pioneer work and other overheads. Dementia UK provides the £30,000 needed to train a Registered Mental health Nurse to become an expert in Dementia care and the salary is paid by the NHS or other not-for-profit organisations. Sometimes Dementia UK bump start the first year's salary. Increasingly, Dementia UK relies on donors to play a big part in funding Admiral Nurses – sometimes The Health Lottery or BUPA has financed the salary of an Admiral Nurse."
At the moment, there are only 85 Admiral Nurses in the UK and, clearly, with cases of dementia now topping 800,000 in England, many more of these qualified Nurses are – and will be – needed. In her email to me, Francesca posed the question "Would it not be better to invest the £2.4 million – set aside for the Dementia Friends Initiative – in the recruiting, training and expanding the network of Admiral Nurses?"
She has a good point and her concern as to how the Dementia Friends will be monitored, in order to protect elderly and vulnerable adults, is very valid. After all, as we have seen recently, where there are children, paedophiles infiltrate – and, following far too many examples of the abuse of the elderly in their homes, care homes or hospitals – it is obvious that very stringent checks will need to be put in place to prevent the equivalent happening to people at the other end of the age spectrum.
To find out if there is an Admiral Nurse in your area, please ring 0845 257 9406 (phones are answered Tuesdays-Thursdays 11am-8.45pm and Saturdays 10 am-1pm) or email direct@dementiauk.org
For Christmas cards or to donate to the charity, please log on to www.dementiauk.org
If you are a carer for someone with dementia, you might think about joining Dementia UK's "Uniting Carers", which is an involvement network of family carers of people with dementia. The aim of the network is to give carers the opportunity to raise awareness and increase people's understanding of dementia – and find support from others in the same situation. Click on the link on Dementia UK's website.
Those with dementia have complex needs and the benefit of an Admiral Nurse at your side to make the "journey" clearer – and less like travelling through Narnia – knows no bounds.
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I always say that we may have this illness, but we are all so different.
This is my own daily problems, but I would gladly share anyone elses, if they send them in,