Involving patients in stroke research

Guest blog by Dr Madina Kara, Research Awards Manager, The Stroke Association on the benefits of patient involvement in stroke research. This month is ‘Action on Stroke Month‘ which is all about reaching out to stroke survivors and carers to help raise awareness of stroke, for more information please see The Stroke Association’s website.

Service users are the only people who really understand how a condition affects their day to day life. They have a unique insight that allows them to identify and prioritise areas where research is required, as well as to assist with designing the research. Efforts have been made to involve stroke survivors in stroke research and this has helped move the field forward resulting in fewer strokes, better treatment and rehabilitation, but there is still work to be done.

Public involvement in research is on the increase and many funding bodies require grant applicants to demonstrate how service users will be involved in the research project. However, it is important that researchers do not just pay ‘lip service’ to this requirement and recognise the value that service user involvement can bring to research.

Stroke survivors help choose the research that is funded

The Stroke Association Service User Review Panel

The Stroke Association ensures that people affected by stroke have an opportunity to help choose the research that we fund. Through our Service User Review Panel stroke survivors, carers and their family members can review all the applications that have been found to be scientifically sound through our peer-review process. They then rank the applications according to the importance of the research to them.

These rankings are added to those of the Research Awards Committee, made up of scientists and clinicians as well as service user representatives, and the overall top ranking applications are funded.

The Stroke Research Network (SRN) Lay forum

The National Institute for Health Research (NIHR) Stroke Research Network (SRN) brings together researchers, clinicians and people affected by stroke and provides co-ordination, leadership and practical help supporting stroke studies. The SRN have a patient and carer programme and stroke survivors can become involved in the SRN by taking part in a clinical trial or becoming a lay member of the network. Lay members are stroke survivors, carers and anyone affected by stroke and each member joins the SRN’s Clinical Studies Groups to add a service user perspective to discussions and publications. They also provide advice on seminars and conferences.

Successful patient involvement: some examples from the Stroke Association

Approximately one third of stroke survivors experience a communication disorder known as aphasia. The Stroke Association is currently funding the EVA project led by Professor Jane Marshall at City University London which is evaluating the effects of a virtual environment for people with aphasia.

Consultants with aphasia have been recruited to support the design of the virtual communication environment, allowing a real insight into the way people with aphasia respond to the virtual environment. This will ultimately make the use of this technology for aphasia rehabilitation more successful.

Visual problems are common after stroke. Hemianopia, a condition where there is a loss of one half of the visual field in both eyes occurs in about 20 per cent of patients. This condition can make stroke survivors more prone to falls, affect reading ability and significantly affect their quality of life. The Stroke Association is currently funding the VISION trial led by Dr Fiona Rowe at the University of Liverpool. This trial aims to compare two types of treatment for hemianopia after stroke-

• the use of visual scanning which involves training the individual to make more effective eye movements into the side of their visual loss to compensate better for their blind side and
• the use of Prism glasses which are used to move images of objects in the blind side of vision into the seeing part of vision.

This trial has benefited from the inclusion of a stroke survivor with visual impairment on the research team. This stroke survivor was involved in preparing the grant application as well as acting as a consultant throughout the trial including developing the information sheet and consent form, and advising on dissemination routes for the final results.

Recruitment of stroke survivors to clinical trials

It is important to take into account the difficulties of involving stroke survivors in research. There are some common problems after stroke including communication difficulties and cognitive problems which can affect a person’s ability to get involved.

The Stroke Association has produced a clinical trials booklet explaining what a clinical trial is and what it involves in order to help patients make informed decisions about taking part in research. To promote the inclusion of stroke survivors with aphasia, we have also produced an aphasia-friendly version so that people with who have trouble understanding written information can also understand the process and get involved. But a lot more work needs to be done to ensure that all researchers make an effort to include all stroke survivors, e.g. by ensuring that the patient information provided for their trial is accessible to those with communication difficulties.

People affected by a condition have the right to have a say in what research is undertaken. It is also very important to inform patients on the outcome of research projects. Many studies do this through a dedicated trial website, or newsletters.

Over the past 20 years the Stroke Association has supported vital stroke research and we continue to inform the public of the achievements of the research we have funded so that they are aware of the difference their donations make.

Walking to work: not as easy as you think

Last week was ‘Walk to Work Week’ and Gail Beer, Director of Operations, took the opportunity to write of her experiences. 

I regularly walk home from work so Walk to Work week gave me no qualms, although of course I would be walking home. My own journey is only  3 miles so it is possible to walk to work and takes me about an hour, depending on traffic lights, window shopping and  the weather! I usually walk about 3 times a week, less in winter and more in summer.   Starting  from  the office  I  turn  into Victoria Street pass Westminster Abbey and then along Whitehall,  a quick view of Downing Street and Horse Guards  and  into the  Strand ;  skirting Trafalgar Square.  I then head up into Fleet Street pass the Royal Courts of Justice and Kings College. Finally I see St Pauls  Cathedral before me,  I cut through Paternoster Square and then home. My walk home is a wonderful experience,  seeing all the major sights from which I never tire.

Last week was going to be a doddle  for an old hand like me.  However,  it started badly, Monday evening was a late finish due to a board meeting  and rather than walk home in the dark I got the tube and thereby fell  at the very first hurdle!

Tuesday was raining yet I set off in sturdy shoes, umbrella and thick coat to brave the  May weather.  The traffic spray was pretty bad and the number of umbrellas trying to poke  me  as I marched along  was truly alarming.  It was cold,  windy and generally unpleasant.  After a day at work   did I really want to walk 3 miles.  My last opportunity to jump on the tube is at  Embankment,  I faced front and carried on.

Wednesday  wasn’t too bad,  I left the office in plenty of time  to get home at a reasonable hour, I wanted to be in by 7pm.  The warmer weather had brought out the tourists and as busy Londoner I found myself muttering  as I strode  through the milling crowds  at Downing Street, or were they  just rebel MPs? By the time I had walked  popped into Marks and Spencer’s and Boots  I was in at 7.30, so most of the evening had gone. I don’t have any children to worry about when I get in but walking instead of  driving or taking transport  clearly eats into your day and if you are a busy parent or carer it isn’t easy.

Thursday  saw me  elsewhere and not at 2020health.  I had a lot to carry and had to be at Waterloo for 09.06 train.  I set off in the wind  and rather wished I hadn’t . I was blown all over the place and  my arms ached from carrying so much stuff.  I decided not to walk back from Waterloo that evening or walk to Islington where I was meeting a friend for supper .   I did walk the mile and a half home and got home at 10.30.  By then it was pretty cold , but I had to get some miles under my belt.

Friday was a great day, warmer,  drier and  I had no commitments that meant I had to rush.   I wandered home taking in the crowds and the shops and  thoroughly enjoyed the time.

Overall I had walked 12 miles  during walk to work week.  ( at the turn of the 20^th century  we were walking 26 miles per week on average!) I  achieved my 10,000 steps per day on the 4 days out of 5 I did walk  and burnt of about 250 calories per day  whilst walking.

What did I learn?  Well, it takes a lot of walking to burn calories off, walking  takes real commitment. If the weather is bad it is easier to jump on a bus,  finishing work late  isn’t conducive to walking home, or for that matter starting early.  I have a wonderful and interesting walk, not so pleasant if you have to walk in places that may be poorly lit or where you may be frightened.  Getting the right amount of exercise takes commitment  and  encouragement  from those around you. Rather than walk to work let’s see employers helping  employees to  exercise and participate in sport  during the day, in breaks or though workplace activities.  Next year I am going to be having a walking at work week!

2020health’s response to the announcement of David Nicholson stepping down

Sir David Nicholson has announced today that he will be standing down as Chief Executive for NHS England in March 2014.

Following this announcement Julia Manning, Chief Executive of  2020health said:

“Whilst David Nicholson has worked passionately throughout his career to improve services in the NHS , we believe he has made the right decision by deciding now to retire.

The Mid-Staffordshire Scandal which took place and unfolded under his tenure is an inexcusable series of events. Stepping down from his position as Chief Executive of NHS England will not bring justice to the patient’s and their families, nor will it solve the problems that the NHS faces in its wake. But, is the right thing to do for someone who failed to tackle the serious abuse of a significant number of people.

It is imperative that we announce his successor as soon as possible to ensure continuity of leadership at a time when the NHS is under enormous pressure.”

A critical time for epilepsy in England?

This week is National Epilepsy Week (19-25 May), and as with many medical conditions, a key issue is the ongoing development of health services to meet people’s needs. Earlier this year, Epilepsy Action published a report looking into the health services provided in England, and the likelihood that they will improve in the near future. Pete Scott, Senior Health Policy and Campaigns Officer with Epilepsy Action guides us through some of the analysis.

 

As a test case for the Health and Social Care Act, epilepsy should be pretty near the top of any list. It has a reasonable prevalence (neither rare nor overly common) and is present in all acute hospitals, doctor’s surgeries and residential homes. It requires input from primary, acute and social care in order to achieve successful outcomes.

It is precisely the type of condition that has been badly catered for in the past – it is not significant enough to earn a national director or fully-funded strategy, yet it is highly visible (not least in its impact on budgets). It also sits in that troublesome pot called long-term conditions, whereby successful care should be measured by quality of life and ongoing management, as much as numbers cured. These conditions are something even the strongest advocates of the NHS would agree has not been very well provided for up-to-now.

Our survey audit (conducted last year) backed up this view. We found fractured care pathways, a dislocated service based on where a person lives, and a deficiency in the number of specialists. A booster shot of some kind is long overdue.

And if epilepsy is a reasonable litmus test for measuring the new reforms, the initial signs are not encouraging. Of the shadow Clinical Commissioning Groups we surveyed, two thirds (66 per cent) did not have, or did not have any intention to produce, an assessment of the needs of people with epilepsy. The survey of local authorities asked similar questions about any ‘plans for planning’. Only a quarter of the Joint Strategic Needs Assessments for 2011/12 included a section that mentions epilepsy.

From this, it is clear that the frameworks and indicators set will have to be conscientiously designed and focused fairly on those conditions that remain under the radar. Otherwise the new NHS risks continuing the same journey and repeating the same mistakes as the old one.

You can find out more about this project and the surveys, including the results provided by each local area, by visiting epilepsy.org.uk/acriticaltime

Depression and Anxiety after stroke

As part of ‘Action on Stroke Month‘ The Stroke Association held a round-table event on the 13th May to discuss anxiety and depression after stroke.

Dr Madina Kara, Research Awards Manager at The Stroke Association, writes up the latest research findings which were discussed on the day. 

Stroke changes peoples’ lives in an instant and can have a profound psychological and emotional impact on the stroke survivor and their family or caregiver. In the last 20 years there has been significant improvement in the prevention and treatment of stroke as well as an increasing focus and provision of rehabilitation services after stroke.

Today, stroke survivors undergo physiotherapy, occupational therapy and speech and language therapy to support them to overcome the physical and communication challenges that they have been left with. However, there is one area in which healthcare is failing and that is recognising and treating the psychological and emotional impact of stroke.

The emotional impact of stroke

The report ‘Feeling Overwhelmed’, published by the Stroke Association, highlights the fact that the emotional impact of stroke can be just as devastating as its physical effects. We received over 2,700 responses to our survey and they exposed some of the failures of our healthcare system in providing support for those experiencing the psychological and emotional effects of stroke.

Experiencing feelings of anxiety was reported by 67 % of stroke survivors and 59 % felt depressed. Yet despite this tremendous emotional burden, only 2 in 10 stroke survivors were given information, advice and support on coping with the psychological consequences of stroke. The emotional impact on carers is also often overlooked. With 79 % of carers reporting experiencing anxiety and 56 % feeling depressed, it is important to increase the level of support being provided to carers.

Research Roundtables

It is important that research funders, researchers, clinicians and policy stakeholders all work together to make progress in meeting the needs of stroke survivors. With this in mind the Research Department at the Stroke Association have launched a new programme of research roundtable meetings to bring together key stakeholders and discuss important topics in stroke. We aim to:

• Share emerging findings of our research with researchers, policy makers and stroke survivors
• Discuss the clinical and policy implications of the findings. Ensure the research we fund is relevant and addresses the existing needs of stroke survivors

To link in with Action on Stroke Month, the theme of our first meeting on 13 May 2013 was Anxiety and Depression after stroke. We heard from three of the Stroke Association’s current grant holders in the field about their latest research findings.

The natural history, predictors and outcomes of depression after stroke

Dr Luis Ayerbe, a Primary Care Lecturer, who has undertaken systematic reviews on post-stroke depression, reported that depression is a frequent problem that persistently affects one in two patients up to 15 years after stroke. Most episodes of depression start shortly after stroke and are of relatively short duration but there is a high proportion of recurrence.

There are several major predictors of depression after stroke including disability, stroke severity, cognitive impairment, poor family support and anxiety. Dr Ayerbe recommends that all stroke patients should be routinely assessed for depression during the acute phase as well as periodically after discharge, perhaps as part of primary care stroke management.

Anti-depressants to aid recovery after stroke
Professor Gillian Mead, Professor of Stroke and Elderly Care Medicine at University of Edinburgh, is lead researcher on the FOCUS trial. This randomised controlled trial aims to investigate whether taking a 6 month course of the anti-depressant fluoxetine can improve recovery after stroke. Evidence from previous small studies has shown that Selective Serotonin Reuptake Inhibitors (SSRIs), like fluoxetine, can enhance recovery after stroke but larger trials are needed to confirm whether fluoxetine is beneficial and can be used for routine care. As a secondary outcome, the FOCUS trial will look for beneficial effects on treatment on depression and mood after stroke.

Screening for anxiety in older people after stroke

Anxiety is the most common mental health disorder and is prevalent after stroke. Whilst the condition is distressing in itself, it can also affect peoples’ long term outcomes. The National clinical guidelines for stroke discuss post-stroke anxiety and the importance of identifying and addressing the psychological needs of stroke survivors.

Accurate screening for anxiety is the first step towards identifying patients in need of further diagnosis and treatment. However, this is problematic in older patients (over 65s) as most measures have been developed for younger adults. Dr Ian Kneebone, a Consultant Clinical Psychologist and visiting Reader at the University of Surrey, is leading a study on screening for anxiety in older people after stroke. This study is investigating whether the Geriatric Anxiety Inventory is valid, reliable and shows good sensitivity in stroke patients over 65. The research is still in its early days but if the GAI is a valid method to test for anxiety in older stroke survivors then it will be important to introduce its routine use in clinical practice.

Implications for those involved in stroke care

Attendees at the roundtable included other eminent researchers in the field of anxiety and depression after stroke including Professor Reg Morris, a Clinical Psychologist at Cardiff University. Professor Morris has written an article ‘Addressing the emotional impact of stroke’ for the Health Service Journal in which he discusses the findings and implications of the Stroke Association’s ‘Feeling Overwhelmed’ report. He recommends the inclusion of psychological expertise in stroke teams to ensure the psychological and emotional effects of stroke are adequately recognised, a point that was echoed at the roundtable.

There is a need to lobby for not only screening of these emotional disorders to be put in place but also the need to follow up the results of the screening by supporting stroke survivors, carers and families to recover from the emotional impact of stroke.

Clinicians should advise stroke survivors that they are at high risk of developing depression and encourage them to come forward and seek help. It is important to reduce the stigma associated with depression and ensure that stroke survivors, carers and their families are made aware of the support available. The Stroke Association has produced the ‘You’re not alone’ booklet that provides information about coping with the emotional impact of stroke.

Some of the most common problems after stroke, including communication disorders like aphasia, and cognitive problems make it difficult for stroke survivors to seek emotional support. It is important to diagnose anxiety and depression in these stroke survivors who may not be able to communicate their feelings and who are at a high risk of feeling socially isolated.

The roundtable on Anxiety and Depression provided a forum for discussion and has helped raise the profile of current research in this area. It has given us a better idea of the measures needed to tackle the issue and to best meet the needs of those affected by psychological conditions after stroke.

The next roundtable event will focus on upper limb rehabilitation. It will be held in October 2013.

From Royal engagement to community engagement

A guest blog post by Peter Ellis, Chief Executive of the Richard House Children’s Hospice

We were delighted, if a little surprised, to welcome two television news crews to our opening celebrations for Children’s Hospice Week (CHW) earlier this month.

While I’d like to think Sky News and ITN came to report on the innovative care we provide to the children, young people and families Richard House supports in North Central and North East London, I know their real interest was in Catherine, Duchess of Cambridge’s support for CHW.

The Duchess of Cambridge, in her capacity as the royal patron of East Anglia’s Children’s Hospices, recorded a heartfelt appeal urging people to support their local children’s hospice and described the work children’s hospices do as “transformational”.  The media’s interest in this first-ever video message by the pregnant Duchess of Cambridge catapulted children’s hospices to the top of the media agenda at the start of CHW and all of us have benefited in some way from her support.  She has given many of the children’s hospices across the UK a national platform to talk about the work we do.

For children’s hospices this has been a critical boost in informing people about our work. Against a backdrop of changes in NHS and local authority commissioning and funding of care, media interest in anything the Duchess does has given us all the opportunity to distinguish what children’s hospices provide from the care and support found in adult hospices.

The reporters we hosted were surprised by what they found at Richard House; a bright, happy hospice filled with activities representing living for  children with life-threatening and life-limiting conditions as well as that of their siblings, parents, friends and wider families. They witnessed firsthand some of the activities we offer here such as craft sessions and drama.

What we were also able to tell the reporters was how important working with the communities we serve is to Richard House.  I believe that we embody the change in attitudes that has characterised shifts in both children and adult hospices over recent years.  We believe in the pursuit of equity, the active participation of children, young people and their families and their empowerment. We recognise, especially being based in one of the poorest English boroughs, the social determinants of health as well as the fact that all communities, on a daily basis, could actively support families who live with death, dying, loss and grief.

The work we are currently undertaking supports the wider move towards compassionate communities where the hospice provides training and support but families are supported by their friends and neighbours in their own homes.

We are currently working hard to look beyond the hospice and learn about the community in which we are based. We are engaging with community groups and organisations providing education and information, sharing expertise and raising awareness of the support we can provide. We regularly visit with businesses, faith groups, and schools, engaging pupils in conversations on death, dying loss and bereavement. We also encourage people to visit us and think of Richard House as a resource to them, too.

At the moment we support or are in touch with around 300 families from our catchment area but research suggests there may be as many as 3000 children locally who would benefit from the kind of support we offer.  The way our service is currently structured, we couldn’t support 3000 children all of a sudden, nor should we be the only source of support. We believe that as a hub for a wider network across North Central and North East London, working with other providers of care, Richard House could become a point of contact, a place for information, learning and development. In this way we could enable the support of the 3000 families, facilitating the delivery of joined up care that is consistently and effectively offered as a virtual network of support.

It is an ongoing and long journey ahead. There are a number of tasks we have to complete and research before Richard House can fully realise its vision of communities having space where they can journey together to create memories of living and dying.  We need to know more about the hugely diverse and sometimes transient nature of the communities around us, as well as their needs and attitudes in relation to seriously ill children and young people.

We believe very strongly, however, that we should strive for a role within our communities in which Richard House works in collaboration with others to provide holistic care for children and young people with life-limiting, life-threatening conditions and complex healthcare needs, helping families choose when, where and how they receive care and support.

We also believe it is our role to support individuals, families and communities of all faiths and those with no faith with living, dying and death and to promote education and understanding of issues to do with living, dying and death.

To explore this kind of future for children’s hospices, Together for Short Lives, the leading UK charity for all children with life-threatening and life-limiting conditions and all those who support, love and care for them, including families, professionals and services such as children’s hospices, has established a Engaging Communities Action Group, which I chair.

The Action Group aims to:

• Raise awareness of children’s palliative care within communities through engagement and education
• Reengage children and young people with palliative care needs with their local communities and
• Encourage local communities to support children and young people with palliative care needs and their families and the services they use.

The success of this work will require a paradigm change in our work, we need to move away from “being in charge”, we need to be able to let go and work with whole community approaches. The concept calls for integration between professional and personal roles and acknowledges that palliative care is everyone’s business, not just the realm of the professional.

It’s Arthritis Care Week – something can always be done

It’s Arthritis Care Week 2013[i] and Phil Baker, Acting CEO, Arthritis Care writes us a guest blog post. 

An annual occurrence that gives rise to an extraordinary range and number of activities across the UK aimed at raising profile and some much-needed funds for the charity and, most importantly of all, raising awareness of what it can be like to live with one or more of the many forms of this painful and debilitating long term condition. It is no small matter either; with some 10 million people in the UK having arthritis, the impact on the individual, family members and wider society can be profound. With juvenile forms affecting over 12,000 children and young people, it really is a cradle to grave issue.

This year our theme is ‘ Something can always be done‘ as we believe that there is always something that you can do/raise/change – in improving your own life with arthritis or that of others.  We believe that making even small changes to lifestyle and managing symptoms will help.   However, the first step is always the hardest − and that’s why we are here to help.

A landmark study of the burden of all diseases, `The Global Burden of Disease Study’[ii] reported in the Lancet in March this year, provided indisputable evidence that musculoskeletal (MSK) conditions are an enormous and increasing problem in the UK as well as globally and, Arthritis Care believes, need to be given the same priority for policy and resources as other major conditions like cancer, mental health and cardiovascular disease.

In particular, the report found that musculoskeletal disorders account for nearly one third of the entire burden of disability in the UK, which is increasing rapidly as a proportion of the overall burden of disease due to our ageing population. Low back pain is the single biggest cause of disability, followed closely by osteoarthritis.

Health policy in the UK and across the world has largely ignored diseases which affect the quality of lives and independence of people living with them and focused on those with high mortality such ascancer and heart disease. Now, because people are living longer, it is time for priority to be placed on dealing with this enormous burden from arthritis, back pain and other musculoskeletal conditions to prevent unnecessary pain and disability and enable people to keep independent. Despite effective ways of preventing and treating these conditions, many people do not have access to them because they are not a priority.

No one should underestimate the scale of the challenges, Arthritis Care certainly doesn’t, and looking around at the changes in health and social care being driven by the combination of rising demand and funding cutbacks, it is apparent there will be no lasting solutions without a great deal of clear thinking and straightforward political will. On a generic level there are opportunities and threats aplenty.

Arthritis Care is one of many organisations putting their names to letters to Prime Minister and Chancellor of the Exchequer about the impending arrival of the new Care Bill before Parliament – a Bill that could transform our social care system for current and future generations,eliminating the current grossly unfair postcode lottery when it comes to care, but which could all be undermined if the government sets narrow parameters for access to the system.This will lead to the exclusion of all but those with substantial or critical levels of need from the social care system, a move that will impact on vulnerable people with arthritis now and in the future.We are urging the government to ensure that the next spending review invests enough money into the social care system to ensure that all those assessed as having “moderate” need are able to access the care and support they need, when they need it.

Positive progress is evident, however, in the advent of the new focus on long term conditions in NHS England and the very welcome appointment  of Peter Kay as MSK Clinical Director. After years of arguing the case, the inclusion of Rheumatoid Arthritis in the QOF (Quality & Outcomes Framework) that governs much of the focus of attention at GP level, is also to be applauded. And whether you see the advent of the `Lansleyscape’ in the NHS, with CCG’s (Clinical Commissioning Groups), Health & wellbeing Boards etc, as the dawn of a bright new era or the beginning of the end for the NHS as we know it, the need and the opportunity to develop better, more integrated care pathways for MSK conditions with patient self-management and shared decision making embedded in them promises real and substantial gains.Making the most of this opportunity requires a system-wide shift in the professional culture and the healthcare environments towards a psycho-social, rather than a purely bio-medical, model of health and healthcare.

In order to achieve the best outcomes for people with arthritis, health professionals have to be able to play their part in supporting people to determine what they want from their health care and to enable and support them to better manage their health.

But the final missing piece is for the health professionals to realise and acknowledge that there is another `professional’ partner willing and more than able to drive this transformation  -  organisations like Arthritis Care (a UK pioneer in supported self-management), with highly skilled and motivated volunteers ready and waiting to take pressure out of the formal healthcare system and help deliver the improvements in health outcomes proven to arise from a proper investment in support, health literacy and patient activation.

Labour’s newly formed independent commission on integrating health and social care, under Sir John Oldham, is one to watch, but we hope it doesn’t just focus on a generic agenda. Although we recognize that at the macro level this task of integration or co-ordination across disciplines must begin with a largely generic perspective, it would be a mistake to believe that the problems with coordinating services for long term conditions like arthritis can be addressed by generic measures alone. Many of the organizational solutions to improving care require the existence of condition – specific thinking and approaches. For example, it would not have been possible to deliver the massive improvements in treatment of heart disease and stroke without a national strategy dedicated to improving services for those conditions. The recent national commitment toclinical networks and national clinical directorsfor, amongst others, MSK conditions, is a very welcome development, which we fully endorse and would hope to see retained.

Meanwhile, the Scottish Parliament is debating legislation to integrate health and social care within the wider context of a public service reform agenda and a warning from the UK Joint Committee on Human Rights last year that the right of disabled people to independent living could be severely undermined, stating that “the government and other interested parties should immediately assess the need for, and feasibilityof, legislation to establish independent living as afreestanding right”.

“Scotland’s National Action Plan for Human Rights” talks about Welfare reforms and tightening eligibility criteria for social care support threatening to erode the support many people need to enable their full participation in society. It suggests that using a  human rights approach offers a fair and consistent basis to guide policy development, service redesign and resourcing decisions. This requires human rights principles to be embedded clearly within law and policy – for example the health and social care integration legislation – and within processes and decision making, including local strategic commissioning.A rights based approach can help to clarify

expectations of fair, consistent and respectful experiences and of redress when standards fall below this. It offers a coherent values base to reform social care in order to “empower citizens and unlock them from the failings of past systems, rather than locking them into a new system that lacks a clear vision.

And so, back to today’s reality, as we look at the events planned for Arthritis Care Week we canfind : -

• An Arthritis Amble on Weston Super mare’s newly renovated pier
• Wear Valley Branch providing information in Boots Chemist all week
• An Awareness Display Wansbeck Hospital
• Attendance at Volunteer Fair, Chester
• Awareness event – Blackpool Independent Living Centre
• Gateshead branch providing Peer Support at the Queen Elizabeth Hospital
• Flintshire branch Ambling for Arthritis on 19^th May.
• West Bromwich Branch chosen as charity of the month by Asda, Great Barr
• Display and booklets at Beccles Library in Norfolk throughout the week
• Runners donating from the Belfast City Marathon
• ‘Introduction to self-management’, Tai Chi and relaxation at the ‘You’re the Expert Event’ for all people living with Long Term Conditions in Orkney

………. and that’s just the tip of the proverbial lump of ice.

There’s probably something happening near you so do join in if you can  – if only to let us know what your `something’ is!

---

[i] Arthritis in the UK is very common and affects some ten million people (one in six) of the UK population.  But knowledge of arthritis is very low, misunderstanding and misinformation rife, and most people think that there’s nothing that they can do about it and that it’s inevitable.

[ii] http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2813%2960355-4/abstract accessed 13th May 2013