My Life with the Dementia Friendly Hospital Taskforce

This is a guest blog by tide member Frank Arrojo on his experience being a member of the Dementia Action Alliance’s Dementia Friendly Hospital Taskforce.

As the carer member of the Dementia Action Alliance’s Dementia Friendly Hospital Taskforce I am pleased to announce that a new revised Dementia Friendly Hospital Charter has been published today (Monday 3 September 2018).

If you have not heard of the charter before you may then be surprised to learn that members of tide have been involved with this initiative since its inception in October 2012.  The purpose of writing this article is to try and give you an insight into how and why I became involved, the journey I have been on with the taskforce, the contribution I have sought to make and what has enabled me to actually make this contribution.

My involvement with the charter began in 2014 when I participated in a consultation event on its initial development.  But it was not until October 2015 when I was approached by tide asking whether I would be interested in joining the Dementia Action Action Alliance’s Dementia Friendly Hospital Taskforce.

To be perfectly honest I did not know much about the role of the taskforce.  But at the same time this was not unusual because in my 7 years of being involved in campaigns and initiatives, it is sometimes the case that when you become involved in a project or initiative there is an initial period of learning in seeking to understand and realise the contribution and impact you can make.  Therefore, once I had understood that the purpose of the taskforce remit is to encourage hospitals in England to become dementia friendly, with the aim of improving the experience of patients with dementia and their carers I was hooked.

There are many reasons why I was happy to be involved.  For example, one of the principles of the charter is that “Care is provided by staff who are appropriately trained in dementia care”, and this takes me back to one of the main reasons why I decided to become a member of tide and its predecessor organisation.  When I cared for my late mum I was simply shocked at how variable the standard of care she received each time she was in hospital.  At that time I simply could not believe that I seemed to know more about dementia and how it affected mum than anyone else.  But at the same time no one wanted to involve or listen to me !  Also, these experiences were in stark contrast to the outstanding treatment and care mum had received from the NHS up until the time before her dementia became apparent.

The taskforce meets on average 4-5 times a year, and attending my first meeting was a bit daunting because not only was I the only carer member, the rest of the membership is comprised of frontline hospital staff, clinicians, representatives from Department of Health, Royal College of Nursing and other relevant institutions.  However, what helped is that I already knew a couple of the members because of my previous involvement in other projects involved in improving care in hospitals, such as with the Royal College of Nursing.

During this initial period on the taskforce – back in late 2015 and 2016 – the emphasis was in publicising the charter and encouraging acute hospitals to sign up.  But signing up to the charter itself is not the solution, as it is merely a vehicle/tool by which change can be encouraged and made.  Therefore, at the same time the taskforce arranged a number of events encouraging those hospitals to talk about and promote their improvements, and thus share good practice.  And this work continues, e.g. at last year’s UK Dementia Congress the taskforce delivered a range of sessions specifically targeted at improving the patient and carer experience in hospitals, and we have been invited to do so again later this year in Brighton in which I will chair one of the sessions.

At the same time for the past year the taskforce has been focussed on reviewing the charter, and there were a number of reasons why it needed to be updated.  For example, the charter needs to reflect the latest published good practice on delivering care as well as the need to take account of the new Dementia (“We”) Statements, which I and other members of tide were involved in developing last year.  It was pleasing to witness that all the members of the taskforce were focussed on ensuring that the charter reflected the dementia statements, e.g. another principle of the charter is that “people with dementia and their families/carers are recognised as partners in their care”.

When you come to read the new charter you will see that it has been simplified in terms of who is its main audience, which are all the people who work and volunteer in the hospital (all the way up to consultants, senior managers and the Board).  This is because if a hospital is signed up to the charter they need to take ownership of it.

However, when the new charter is launched there will also be a commitment for a piece of work to be conducted by both people with dementia and carers in coming up with a poster – to be displayed in hospital wards – publicising the charter.  And so I expect there will be some more positive news on this in the coming months.

I hope I have been able to give you a flavour of what has been happening on the taskforce these past 3 years.  It is a big responsibility seeking to speak on behalf of all family and other unpaid carers – as well as those patients with dementia who are no longer able to express themselves.  However, I also realise there are numerous factors that have been critical in enabling me to contribute to the work of the taskforce, such as:

  • the support I have received from the staff of tide and its predecessor organisation, and knowing that I can contact them at any time is a great comfort
  • the experiences I have had in being involved in various previous projects (including research), whether via tide or other organisations
  • the knowledge I have developed in understanding how the health and social services systems operate in England, and in particular where hospitals fit in to the system
  • the current stories I hear from family carers I know who I often meet on a weekly basis via the support groups I run (especially as my story is now over 7 years old)
  • the various skills and experience I have been able to re-use from my working life in the public sector of 26 years.

Looking back I cannot quite believe I have been involved with the charter in one form or another for the past 3½ years.  Also, it is pleasing to witness the commitment and passion of all the members of the taskforce in seeking to make a difference.  But at the same time I realise this is only the start, and there is a very long way to go in achieving the taskforce’s aim of improving “… the experience of people living with dementia and their carers” in hospital.

Find out more about the charter here.