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Sian Brooks: Networking for Stroke Survivors

Jan 23, 2014 by

Stepping stones

Stepping stones

Michael F. Shaughnessy –

1) Sian, first of all, tell us about yourself and what you do and your education and experience.

After leaving the Air Force in 2007, I qualified as a personal trainer. My ambitions were always to work with people living with long term health conditions so when I heard about working with stroke survivors and using exercise as a rehabilitation tool, I became intrigued! We’re talking about a population group that have so little proactive support and suffer indefinitely because of this, so I was immediately hooked, and stroke rehab became my focus for the subsequent 5 years. I’ve now run 3 separate exercise classes for stroke survivors and worked in and around their homes, meeting their careers and understanding what their world entails. Two clients have now returned to work, all can now walk confidently and most can get up off the floor safely (one guy in particular was told by his physio not to even try to get out of his wheelchair! within 2 weeks of exercise therapy, he was walking short distances and able to have his catheter removed .) It is truly the most satisfying job I have ever had and I just hope more trainers share the same passion.

2) Now, tell us about your interaction with ARNI – and how you got involved in this organization.

I met with Tom Balchin back in early 2008 at a seminar he was conducting for ARNI (which back then was in its early stages of training instructors like me) and I’ve never looked back really. Tom is a very likeable guy and extremely inspiring, we just hit it off really and since then I’ve supported him at 2 UK Stroke Forums and assisted in several training weekends, seminars and taster sessions. ARNI has a vast amount to offer a stroke survivor’s recovery and due to the highly motivated attitude of all ARNI instructors, ARNI not only provides the practical support but also the psychological aspect as well.

3) What are some of the problems stroke survivors face in terms of rehabilitation?

The answer to this question is a matrix of issues really. I would say the primary issue is to do with a lack of outpatient, proactive, longitudinal research. Without the evidence to prove a form of rehabilitation works, the NHS will not support its use. Equally, if the evidence is limited, it becomes less likely that the stroke survivor themselves will attempt it. Then at GP level, unless the GP is willing to make proactive suggestions for rehab, rather than simply prescribing a drug, then who is the patient more likely to follow? The physical therapist whose going to make them move and work hard to regain function and reduce pain but has no evidence to prove it works, or the GP, who might be able to provide a drug to relieve symptoms?

Rehab services are also few and far between so access becomes an issue. It is also costly for a council to train instructors to work with stroke patients. NHS outpatient therapy is also an age lottery; the younger you are, the more active and more often the physiotherapy/OT/speech therapy will be. The older the patient, the more passive the therapy becomes and further apart the appointments. Access to appointments is also an issue for some and for people living alone, the priority becomes, not helping that person regain independence and teaching them coping strategies to overcome impairments, but more like; where are they going to live – with a family member? or nursing home?

This to me is an awful circumstance.

I would rather see these people given proactive advice on how to self-manage, how to adapt, how to move and support themselves at home, but we just don’t have the resources or the structure in place to achieve this. I believe it is possible but we need evidence to prove that functional rehab is reliant upon active therapies working together to achieve independence. I hear it too often – the quote from NHS therapist/GP to a stroke patient – “the best thing you can do is get used to your new body” or “after 6 months, you won’t make any improvements physically so there’s really no point in trying to walk, you’ll only put yourself at risk” there are others but these are the most common – what are we saying to survivors? Just give up? “sorry folks, we spent millions saving your life but we’ve got none left to spend on your rehab so here’s a book on coping with stroke impairments (if you’re lucky!)”

The matrix of problems exists because of:

a) Lack of evidence

b) Lack of public funding

c) Limited feedback from NHS after having a stroke

d) Access

e) Age

f) Human instinct to take an easy option and all these factors overlap

4) How difficult is it in England to match up survivors with the appropriate services?

Well, interesting you should ask!

Firstly, the appropriate service needs to exist and secondly, the right person needs to be available to sign post people accordingly. The role of the “Information, Advice and Support Coordinator” of the Stroke Association is to provide this level of service advice, however, this role doesn’t yet exist throughout the country, however, by next year, it should be a comprehensive service. These people are employed to visit stroke survivors upon returning home and ideally have the resources to sign post their clients to the appropriate service. Unfortunately, there is no link between services of different sectors which creates issues for referral purposes. The Stroke Association promote their classes and other charitable services, the council promote theirs and the private sector are reliant upon the internet and proactive googling on a stroke survivors part! GPs therefore, who are the front line, struggle to recommend or refer people to appropriate services as there is no clear pathway or known reliable service. The referral criteria is fairly vague and because of the confusion, most GPs, unless very proactive themselves, will not attempt to suggest, or match up their patients to appropriate services. We are at a stage where, due to the barriers to rehab as listed above, coupled with an array of services that are not always known about, many stroke survivors lose out on vital support. This is why I am attempting to create a stroke service directory.

5) Is there a shortage of specialists in England?

This is fairly subjective as it would depend on the specialist type. Physiotherapists, chiropractors, osteopaths, chiropodists and counsellors are pretty abundant throughout the country in the private sector. All NHS hospitals with neurological wards will also have a full complement of specialist neurological therapists. Where we are very short, are specialist exercise therapists; instructors trained to run specific exercise classes for stroke survivors, or trained to provide training plans as part of the exercise referral scheme. A simple exercise class is arguably one of the best ways to keep a stroke survivor moving and socialising in a proactive and positive manner but there are areas of England that are severely lacking in this dept. There are only two training providers in the country and qualification is expensive. Whether in the private or public sector, this makes for a significant barrier and is reliant upon the genuine passion of the instructor to gain qualification in the field. An area I can’t comment on is private sector speech and language therapists as I am not aware of the stats on this.

6) Now, I understand you are trying to establish a network of individuals world wide to assist stroke survivors- tell us about this.

I am indeed, but firstly, I must stress it will only operate in England for the time being. A Stroke Of Life UK, will be a brand new, online service directory for people living with the effects of a stroke. Its sole purpose is to align the services of both the private sector and public sector and create a “hub” of service information relative to someone’s location in England. This has never been done before and we believe it to be the future in providing information, on a broad scale, to enable stroke survivors to manage their own courses of rehabilitation. It will also create a resource from which Health Professionals and Advice and Support coordinators can effectively and reliably signpost stroke survivors towards appropriate services. I believe communication and good organisation to be the key to an efficient service. At present, it feels a bit chaotic, with many different organisations, businesses and charities all delivering vital services but due to a lack of cohesion, these services are not being used efficiently. Equally, many parts of the country are falling far behind in terms of stroke services and so a stroke survivors future becomes a postcode lottery. The main objective is to offer a stroke survivor choice as to which therapy or course of rehabilitation to take.

7) What have I neglected to ask?

I think you’ve covered everything! I hope I’ve not “talked” too much!! It is worth emphasizing the desperate need for the funding of long term, exercise after stroke research. Without statistical evidence, we will never change the attitude that exercise is just a tool for losing weight. Exercise, when used appropriately as a therapy, is hugely beneficial and cost effective in the long run. But we can’t make statements purely based on anecdotal evidence nowadays, it must be supported by research. ARNI and Later Life are the only recognized training providers in the UK, but they are both still short of accredited research because the funding just isn’t available. ARNI provides therapists with invaluable skills for rehabilitating stroke survivors in their homes and facilitates rehabilitation through activities of daily living, making it a sustainable therapy. However, without research, all an ARNI instructor can do is scratch the surface until they are taken seriously by health professionals.

8) Where can interested others learn more ?

Information about ARNI can be found at www.arni.uk.com or by checking out Tom Balchin’s book “The Successful Stroke Survivor”.

A Stroke Of Life, is still in its early days and exists on Twitter and Facebook, so please come and join us to keep up to date with our progress. The directory website, once built, will be posted immediately on all social networking sites so keep an eye open! The URL will be www.strokeoflife.co.uk

It is worth mentioning that all social media sites use the heading A Stroke of Life UK as there already exists in America – A Stroke of Life, a voluntary organisation supporting stroke survivors, run by Karintha Styles.

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