Saturday, 7 December 2013

A plea to commissioners......

As the G8 summit fasts approaches, my thoughts turn to those living with dementia everyday of their lives and their families, who often feel lonely and isolated by the lack of support post diagnosis.

As the great and the good in the dementia world debate, wander around the exhibition hall and share business cards, I want them to stop and think about what is happening right here, right now in this country for those living with dementia.

For me more than anything we must stop headlines that talk about the financial cost to the country that dementia brings. If we are to end the stigma, we must first stop dementia sounding like a financial burden on this country. For those that have loved and lost family members to dementia we know that they have contributed to society in more ways than one. Many have worked all their lives, paid their taxes, national insurance and prepared for their future by putting aside money towards their pension. If we can not, as a society now able to support them in their hour of need, what does that say about us?

Our society needs to see the value our loved ones with dementia bring. My dad Ray had Alzheimer's but he was still our "Raysey" , a husband, father and papa. However in his hour of need I felt society had abandoned him as though he was now a burden and a problem.

There is much talk at the moment of diagnosis rates across the country and that GP's are reluctant to promote the diagnosis rates as they see little point. In fairness to the GP's what they do see, is a lack of care and support available to many of their patients through that process and post diagnosis.  Personally for me the drive should not be to increase diagnosis rates without ensuring that there is the support in place to help families and individuals. I am not saying its not important that people receive a diagnosis but I think it's cruel to give someone this life changing information and then abandon them.

Only last week I heard that the London Dementia Advocacy Service was closing due to lack of  funding, I also had a call from a friend whose dad had just been diagnosed with Alzheimer's and his mother was having a really tough time as his dad tried to come to terms with his diagnosis and didn't know who to turn too. Why are we driving up diagnosis rates without ensuring the whole pathway of care is in place too?

With GP's now being asked to be the care coordinators for the over 75's and frail elderly we have a real opportunity to put the care and support in place for our loved ones with dementia and all our elderly and vulnerable. To do this though it will need significant investment in primary care to put the right staff with the right skills in place to provide that care.  The GP's can not do this alone and will need the multidisciplinary community teams to support them to do this. Community nurses in my opinion and the role they can play in providing continuity of care in the community is undervalued. So I believe is the value of  dementia nurse specialists such as those provided by the Admiral Nursing Services. What we would have given to have had a dementia nurse who was there for us on the end of the phone to provide support and advocacy for us.

So I am asking commissioners, CCG's and GP's to seriously consider having Dementia Nurse Specialists within primary care services to case load manage their patients with dementia. Position them alongside your community Multi-disciplinary teams to support joint working and provide dementia training and awareness. Joint working and continuity of care for those with dementia with a step up/step down care plan in place to prevent unnecessary escalation and crisis admission to hospital.

Before you argue they cost too much think about the other specialist roles for cancer, lung diseases etc and tell me how you can deny those with dementia a terminal illness the same access to specialist care and support. The money saved in unnecessary crisis admissions to hospital can surely out weigh the salary of a senior nurse. We need to invest in a skilled competent workforce that is able to manage people with co morbidity and complex needs if we are to truly provide care closer to people's home and help prevent unnecessary hospital admissions.

With the focus on A&E at the moment, we were here before 10 years ago when I was working as a senior nurse in an A&E department. The 4 hour target was brought in to try and get the whole system to work together to prevent exactly what is happening now! What I haven't seen though over the last 10 years and I have worked in Health Care for nearly 30 years now is significant investment in primary care services to ensure we have timely discharge and admission avoidance. In fact what we now have I believe is a future staffing crisis as community nurses start to leave and retire and their are now less nurses in the community to care for our elderly and vulnerable.

So please please as a daughter who lost a beloved father to Alzheimer's, invest in Primary care, provide dementia nurses to coordinate care for our loved ones, raise awareness and help reduce stigma and this in turn will bring people forward for diagnosis knowing they are not going to be diagnosed into a life without care and support. Thank you.


  1. Well said Sally Ann i agree with you needs to be more Dementia nurses and also wards ,would be helpful this is not going to go away sadly as more and more people have some form of Dementia Alzheimers i too faced all the hospital problems and found myself constantly apologising .Wish i could do something .
    Well done for posting ,and sorry for your loss , your mum is some woman to have taken care of your dad ,as i know what a job it is and what it entails .God Bless .

  2. Sorry for your loss Sally our thoughts entirely