I was kindly invited to speak at this conference by CAPITA and welcomed the chance to speak on the Stroke Service and how we achieved this in Kingston upon Hull and the East Riding of Yorkshire over a period of 2 years 8 months since that first meeting in November 1999.

As you can see from the list a large area of the UK was represented so although only 22 attended that figure does not give a true reflection of the interest shown across a wide area.

Margaret chaired the conference and gave a very good presentation on what we stroke survivors and carers have heard time and time again. Not enough stroke units, investment, research or trained staff.

As I listened I soon realised that I was hearing the same things that I have been hearing for over 5 years, thousands of unnecessary deaths every year, thousands with severe disability and a post code lottery, what a damming statement this is to make in the 21st century and one that we should all be ashamed of!

The only thing that was different was that new buzzwords appear and ministers make statements that mean nothing, are flippant as I see them and I find dammed offensive. There is no way by 2004 that the milestone to have specialist stroke services as a KEY TARGET is possible without the correct funding, commitment and staff highly trained in Stroke, I know it, you know it everyone in the NHS knows it, apart from the MINISTER.
How can a 2% increase in stroke patients being treated in a stroke unit (please note that no one defines what minimum size a stroke unit should be) be classed as The Proportion of patients are being treated in specialist stroke units by the Minister of Health May 2003, when only a quarter of all stroke patients get anywhere near a stroke unit! What Proportion of what figure is the minister talking about, again what is a Stroke Unit two beds tucked away in a corner somewhere?

I know that we have moved forward in this area where stroke treatment and care is given, but I will tell you this if you are going to move away check what stroke services there are in the area you are moving to, or you could be very sorry indeed.

Margaret’s presentation said Time is Running Out cards have been sent to very NHS organisation in England on the NSF anniversary in March.
I agree time is running out and if people don’t stand up and be counted within the NHS, and other bodies/agencies that administer stroke care or service providers and Users/Carer groups and say honestly and openly just what disgusting and fragmented stroke service we have in some parts of the UK, we will be saying this for the next 5 years.

I know as well as the next person that research into stroke and the way we treat it must go on but at the end of the day, if you do not have anywhere to send stroke patients to be treated on the outcome of the research WHAT GOOD IS IT THEN?

I was very pleased to meet Richard again, I think this is the third time and Dilys will remember we used a lot of Richard’s evidence and what they had in place in the North East when we were campaigning for our stroke service, we also attended a conference in Durham given by The Stroke Association and spoke to people there.

Richard gave a very good presentation on developing a stroke service, Richard mentioned using the evidence that is out there to achieve what you want, pathways, and multidisciplinary practice development, also users and carers.

The service that they have in Northumbria is very similar to ours, the pathways are the same and the groups set up to administer the service is the same the only difference being are the names we use for the groups.

I am not going to cover this whole presentation, however a few points I have to make are: Richard mentioned Strategy and said

WE KNOW WHAT SHOULD BE DONE, MOSTLY, (There is a lot of evidence) WE JUST NEED TO DO IT…But to me the most important thing he said was, that you MUST TAKE YOUR TIME you cannot do it in a year, other wise you will get it wrong.

I also liked this slide!
The pathway process
· The right thing
· In the right way
· At the right time
· To the right person
· By the right person

There was a lot more to Richards presentation, but as I have said it is like ours, this pleased me and gave me hope, from what I can see from the Scottish Border down to the Humber on the east coast we have quite comprehensive stroke services in place, not right yet there are stroke patients still falling into that black hole, but with hard work by the PCTs and Hospital Trust it can and will be put right. We are well on the way in making things better and with the people we have leading it in both areas the future looks good.

Richard finished with this saying Conclusions: Lao Tzu
Go to the people
Live amongst them
Start with what they have
Build on what they know
And when the deed is done and the mission accomplished
Of the best leaders the people will say
“We have done it ourselves”

This presentation was what delivering good stroke care is all about, working together across all agencies in a multidisciplinary way, it said to the people at the conference. It can be done, use the evidence and go away and do it if you are not already, but do it right, there are stroke services out there like Richards and ours that can be visited and good practice learned from, and they must be, if you are not getting it right for stroke patients just remember this it is the third highest killer in the UK and the largest cause of severe disability, so if you have to Name and Shame your PCTs and Hospitals Trusts into giving you the right wards and training to do what you know is right, THEN DO IT.

Strokewatch knows Dr McIntyre very well we met every month for over a year during the setting up of our stroke service, and George like then is still talking openly and honestly on how he see’s things.

The main points that I would like to pick from George’s presentation are:
George spoke about Stroke Prevention, Lifestyle, Hypertension, Vascular Disease, then about TIA and early Detection, moving on to Rehabilitation asking what are the GPs and Primary Cares roles, then Secondary Prevention. All the things we are covering now within our own Stroke Working Group and sub groups.
The PCTs do have a very important part to play in all stroke care and at the top of that list is the funding needed to achieve what is needed to give the best care possible, so please read below to see where thousands of pounds of that funding will go!!!!!!!!!

However this is the point that I wish to comment on!
He also spoke about GMS Contracts and that GPs will be paid Quality Payments amounting to a lot of money if they give a quality service and by lots of money this could be as much as £20,000 to £30,000 a year on top of their salaries!!!!!!!!!! When the contracts were drawn up the GPs governing body would not allow the Government to set quality standards, so now if a GP reaches or gives a higher quality service he will be paid extra for that.

I fully understand that this may improve services from some GPs that are not quite as good as others, but think what this funding could do to improve not just stroke but cancer and coronary care to name just two others.

Call me a fool if you like but I was under the impression that all GPs had to give a high quality service but now GPs will be paid extra for doing that, so when they throw budgets in your face just remember where a lot of the NHS money is now going, this will cost millions a year just to make some GPs richer when they should be giving this kind of service anyway as part of their contract as a GP, or am I living in fairyland just to want a service that all of us are entitled and expect to receive.

George also spoke about partnership working:
With Primary Care Trust
Other Services
Social Services
Carers

We already have this in place with the Partnership working that we have in this area, but I would love to see other areas letting users and carers get involved the way Strokewatch and Strokelink West Cumbria do.

I get the feeling that this is not the case, that some are still only paying lip service to users and carers’ involvement, when it is the only way forward if proper stroke care is to be implemented the way that we want and should be.

Fully understanding partnerships with users/carers showing trust and allowing constructive criticisms on both sides are a must and should be encouraged by every PCT and Hospital Trust in the UK, we must represent ourselves I do not believe that other bodies who have not suffered a stroke or cared for a stroke survivor fully understand our needs or are prepared to put it across the way we do, their hands are tied by the funding they may receive from National Government and Local Authorities and that cannot be in our best interest. Users and Carers Groups must be just that and nothing else; I cringe with fear when I am looking around at some of those that are supposed to represent stroke and taking years to make things better.

I found this hard to follow at times medical jargon and figures and so on, but apart from that I really did get the points the professor was making and have to agree with all he said.

I would like to start this with a quote in the presentation:
“What is most striking for a non-UK stroke physician is the organisation and medical management in the acute phase it appears that a stroke is not seen as a medical emergency in most UK hospitals”
Kjell Asplund, Lancet Neurology 2002

The professor then went on to explain all about Thrombolysis as an effective therapy for the acute ischaemic stroke is administered to the patient within 3 hours.

The professor visited paramedics who are the fire service in the United States one in Los Angeles who are trained to diagnose stroke and get you to hospital within the three hour time scale, but this was not the be all and end all of everything as you may not end up on a well managed acute stroke ward.

Looking at this from my viewpoint I was very happy to understand that more had to be done so that Paramedics and GPs understand that stroke is a medical emergency and they would send and take you to the correct area on arrival, as they would have diagnosed you on the way, but this must also be the case if taken by ambulance as they must also understand and treat stroke as an emergency.

Another area that I would like to comment on listening to Professor Ford is the A&E they must be trained in stroke to recognise the symptoms so that CT can be requested and contact with the stroke team is made, this could be done by training A&E junior staff and nurses by the stroke services management, you must also have proper audit and feedback.

So that all this can be achieved the Acute Hospitals management and PCTs must make stroke a medical emergency in our area, the correct funding must be made available to train the staff and all staff within the stroke service will be able to access this on going training year on year.

Professor’s Ford presentation gave one hope for the future, but what hope have we in stroke care if we do not get the funding that heart and cancer get, the evidence is there for all to read and act on and has been for years, proper stroke care given in the correct way by highly trained staff in the correct working environment saves lives and reduces long term disability, the funding must include consultants, nurses, all therapist, therapist and nursing assistance, family support if you have that service and all community staff and social services staff treating and caring for stroke, user and carer groups.

The stroke service must be under one management whether within the NHS or NOT. There must be proper auditing and feedback and a stroke register set up within the acute hospitals and GPs surgeries is a must IT systems must be able to talk to each other and accessible to all who require the information to give the best service we can to people who are going to have a stroke and be cared for, the systems must also be able to keep track of patients that are out patients in other wards so they also come under the management of the Acute Stroke Service.

I am fully aware that is in hand within our own stroke service and a priority with Dinah Fuller Nurse Consultant for Stroke along with other priorities, I am very glad indeed for all the support we in Kingston upon Hull and The East Riding get from all concerned with stroke, we have a partnership that works and others must strive to attain the same if they are to move forward in a meaningful way.

I am not going to comment on my own presentation that is for others to do!!

I would like to say how very proud I felt at this conference by what we have helped to achieve in this area for stroke patients and their carers, family or friends, by some very hard work by a lot of people from different work areas in the Hospital Trusts, PCTs, Community Health, Social Services and Private sector. It became very clear listening to all the others what a very different partnership working we have set up in our stroke service.

We have as a user carer group been empowered to talk and be listened to, and that empowerment has been effective in establishing an unconditional service need to trust users, we have produced good sound ideas in making the stroke service better and one that we the users and carers wanted and needed. The success of the Jubilee Stroke Days two still to do with reports and actions plans drawn up and on the website for all to read, Book Cases, Stroke Survival Hand Book by Stroke Survivors, and all the hard work still in the pipeline, more books etc. The success of the feedback forms I am sure give Dinah a very important insight into the stroke service and how it is seen by the users and carers, and just recently the addition of a listening library in ward 110.

WE have helped people in other areas of the UK and overseas and will continue to do so, we are truly a unique user carer group as I do not see another like ours for stroke in the UK, yet. But that really does have to change and the sooner the better, for I was saddened to hear that so many other areas of the UK still do not have any proper stroke care or plans that are just fiddling at the edges, things will not change unless we the people that have had a stroke along with our carers, friends and family take things into our own hands and demand changes in a constructive and professional way.

As chairman of Strokewatch I wish to thank the whole committee and every member for your hard work and support and may it continue for years to come, thanks also to the Hospital Trust, PCTs, Community Health, Social Services, Family Support Services of The Stroke Association, all the wonderful nursing and therapy staff, Hull University for allowing us to talk to student nurses 4 times a year and all the others that support and help Strokewatch for without all of you this would not have happened.

I now understand that all parts of the stroke service to be effective and run in a coherent way that gives best value and is fully accountable to the managers of the stroke service has to be managed by them, and not by anyone else. I understand that Social Services and the two private nursing homes supply the staff to the stroke rehab units as does The Stroke Association for family support, but they must and have to be part of the stroke service be accountable and receive the training required if and when needed, and as the PCTs pay for all these things then they have to come under the management of the stroke service. We got rid of a fragmented service by having the stroke service we have today; we must not allow any kind of fragmentation to happen again.

I am sorry but unless we have the stroke units up and working to a very high standard by staff that are trained and experts in stroke so that all who need specialist intervention treatment like Thrombolysis or any other treatment that has now been fully researched and tested giving you a better quality of life after stroke, then test and research all you want it will not do a thing for anyone, as I see things the pressure has to be on getting Acute Stroke Services that are life long and seamless in every major hospital in the UK, or in a years time and for years after we shall still be saying the same things over and over again.

We also need experts in the psychological aspects of stroke, as that is one big gap that needs filling, this is one area that I do know about and caused the most damage by my stroke all I can say is thank you to the person who set up the family support service in Hull they are still the life line and experts when it comes to this topic.

Liked this part very much, we also have a Nurse Consultant for Stroke and they are essential in the running of a stroke service, posts are by Government appointment so they are hard to get your hands on, but there should be a Nurse Consultant for Stroke in every area that is serious in running an acute stroke service that is life long and seamless.

Again we see from Jane’s presentation the areas that need to be fully up to date with the present where stroke care is required is, A&E through Medical Assessment Units to the Acute Stroke Unit. Jane also touches on Thrombolysis, TIA management, Pressure on acute beds, and Staffing.

WE have through our own Nurse Consultant for Stroke most of the things in place that Jane speaks about, our TIA clinic is managed by a nurse specialist and is now seeing more patients then last year, we still have pressure on acute beds it would be nice if we could have the ward opposite 110.

I was very encouraged by Jane’s presentation on Acute Stroke Nursing, Primary & Secondary Prevention, Stroke Rehabilitation (Now there’s a buzz at the moment in our area Rehabilitation), we are now in the process of a establishing a rehab strategy lets hope they get it right or we shall be talking about it this time next year as well.

Jane talked about Longer-term stroke management, such as:
Care Homes
Life goals and skills
Staying Well
Relationship centred care
Vocational Rehabilitation

Jane spoke of The Challenges & opportunities ahead: - Responding to individuals’ on-going issues

The future of stroke nursing, this section gives you hope for the future and lots of good things are being looked at these are some of them: -
Development of the evidence base
Expansion in specialist roles
Clarification of roles
Development of competencies
Development of educational provision
Influence policy and service developments
Inter-national networking
User and carer perspectives

They will be doing a lot of talking at the 3rd Stroke Nursing Conference on the 2nd September 2003.

Jane summarised by saying
Stroke nursing is an exciting specialty to be working in.
It’s up to us to ‘seize the day’!

It is up to all of us to seize the day, every day and give full support to all who are trying to improve stroke services everywhere.

Brian Archibald

24:07:2003