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Don’t leave carers in the dark

Allan LEONARD and Beverley BEATTIE

The following article was published in the 2015–16 annual review of the Northern Ireland Chest Heart & Stroke:

Don’t leave carers in the dark

While we often hear what it’s like to fight the long battle of recovery after stroke, we don’t always hear what it’s like to be a carer of someone who is a stroke survivor. We may imagine becoming a carer when we are in our 60s or 70s, but no one imagines they will become a carer in their 40s.

Allan Leonard was just 44 when he became his wife Beverley’s carer. She had suffered a devastating stroke at the age of 40.

After five months in hospital, including the Regional Acquired Brain Injury Unit (RABIU) at Musgrave Park Hospital, Beverley returned home. But that was just the start of Allan’s long and sometimes frustrating experience as a carer.

“I was probably quite naïve about how soon I would be able to return to an ordinary routine. As a carer I never received any brief from anyone at any time in the process. I figured it out — as most carers do — along the way. There doesn’t seem to be anyone in the system who has any responsibility for the carer’s wellbeing, whether physical or mental. There appears to me to be too much reliance on the selfresilience of the carer.

“Once Beverley became stronger, after about a year, I succeeded in negotiating with the Health Trust to exchange some of Beverley’s personal care provision for personal assistance — a care professional who comes out to accompany and supervise activities directed by the client.

“For Beverley, this meant someone to watch her iron clothes, for example, or to go for short assisted walks in a nearby park.”

Inspired by his wife, Allan was determined to reclaim as much of his own life as practical, whilst accepting their new situation. “Many family carers are so overwhelmed with the enormity of the caring task they don’t take care of themselves. Beverley’s personal care provision meant that I could then spend more time and attention taking care of myself.”

And they both want “to turn something bad into something good,” as Allan put it. From his carer’s perspective, this includes him wanting an honest appreciation by health professionals of the carer’s role in the design of healthcare pathways. He does this by sitting on an Integrated Care Partnership for Ards, along with his wife.

Allan also attends a stroke carers’ group at NICHS, which he said has been useful:

“As with anyone dealing with a traumatic event in their lives, it helps to meet up with others in a similar situation. I suppose that I’m a more conspicuous member of the group — a younger male — but there’s usually someone else who gives me perspective, and the sincerity and goodwill by the staff, volunteers and all reminds me that I’m not alone.”

Caring can take a great physical and emotional toll on a person. If you are a carer, you need to make time for yourself when possible. Relaxing can help stave off feelings of anxiety, stress and even depression. There’s lots of help available.

To find out more, please go to www.nichs.org.uk/carers

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Living the stroke experience: NIMAST 2016

I was part of a five-member panel of stroke survivors and carers who presented short stories of our perspectives, to an audience of delegates at the fifth Northern Ireland conference organised between the Northern Ireland Multidisciplinary Association for Stroke Teams (NIMAST) and the UK Stroke Forum (UKSF), held at La Mon Hotel, Belfast.

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Life objects: Tenx9 Belfast

I told a story at the Tenx9 event at Belfast’s Black Box venue. Tenx9 is a series of monthly events, where nine individuals tell a true, personal story, for up to ten minutes (hence the title). There are six Tenx9 city sites to date (why not start your own!); the Belfast series is led by Padraig and Paul.

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Advice to new carers: Get support from wherever you can

This morning, I spoke about my experience as a carer, on Downtown Radio programme Daytime with Siobhan McGarry:

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“Be Catholic and have a large family”: Tim McGarry at Carers Week launch

20140609 Carers Week

“Be Catholic and have a large family”: Tim McGarry at Carers Week launch

Thousands of people across Northern Ireland provide care for others throughout the year. Carers Week is organised by several charities that come together to celebrate this contribution, signpost carers to further information and support, and encourage ‘hidden’ carers to come forward and be counted.

Carers NI sponsored a Carers Week launch event at the Linen Hall Library, which featured short speeches by Edwin Poots MLA (Minister for Health and Social Care), Kevin Daly (Carers NI Chair), Pamela McCready (Director, Transforming Your Care, HSC Board), and concluding with a personal account from comedian Tim McGarry.

The Minister for Health credited carers with improving outcomes for recipients, while underlining the Department’s support for signposting carers to available services and benefits, as well as the provision of the Direct Payments scheme (which gives carers more flexibility implementing a care package budget).

Kevin Daley thanked everyone for coming. A carer himself, he said that he truly appreciated the effort that would have been required for some to attend today.

Pamela McCready said that the Health and Social Care Board listened to the voice of the care community, exemplified by the inclusion of carers and care users on the 17 Integrated Care Partnerships (ICPs), as part of the implementation of the Government’s policy, Transforming Your Care (TYC).

With a short video, she also showcased a positive example of a Self-Directed Support scheme (akin to Direct Payments).

However, as I described my experience to Mr Daly, I cannot endorse the Direct Payment model.

The theory behind the Direct Payment scheme is that the carer can spend the allocated budget in a manner that maximises benefits to the user, e.g. purchase specialist equipment or alternative care provision.

I pursued this in my effort to secure personal assistance (versus personal care) for my spouse, as her Occupational Therapist and I agreed that such a service would expedite her recovery.

However, I got bogged down in the bureaucracy of it all. Even with the help of the Centre for Independent Living, and a round of professionally conducted recruitment interviews, we failed to appoint a personal assistant.

I was also petrified about accepting all of the liability of becoming an employer, including compliance with labour laws and having to make private provision for such aspects as statutory redundancy pay.

This is from someone who is a Chief Executive by day and serves as company director for two other organisations. How the dickens does an older person, not au fait with company law, manage this?

Thankfully, our health trust was very accommodating, and through a negotiation agreed to incorporate an element of personal assistance in a revised care plan for my wife. It made a world of difference; I credit it with having the greatest impact on her recovery.

I cannot endorse any scheme that places all of the liability on the carer.

Goodness knows carers have enough to deal with.

Instead, I would encourage senior health management officials to support flexibility within the system. In our case, a 15-minute discussion, with supporting evidence, facilitated a decision that produced the best outcome. And without me getting snarled in red tape.

Ms McCready did acknowledge the complex lives of carers, with many juggling home and professional duties.

But this begs the question of how is this reflected in current policies? For example, as I am in employment, I am ineligible for most carer’s benefits. I did feel the economic pressure to quit my job at one point, but knew that would be the worse longer-term option.

As more of us will find ourselves as carers at some point in our lives, and with ever increasing retirement ages (i.e. we’ll still be working at that unpredictable calling), we should be incentivising the ability for carers to maintain paid employment, if possible.

Tim McGarry concluded with some sincere reflections of his own experience as a carer, for both his mother and an aunt.

He quipped, “The one piece of advice I can give you if you’re going to be a carer, is to be Catholic and have a large family!”

In his case, his extended family relations enabled them to provide a 24/7 rota. This demonstrated how many billions of pounds informal networks save the NHS.

Of course, not everyone is blessed with relations. But in any case, “It’s all about how you treat people,” whether in one’s own home or a nursing home.

He gave an example of Angela, a 43-year-old woman who has required full-time care since she was born. Angela does well, thanks to the love and sacrifice of her parents, who are getting ever older themselves. It’s folks like these, said McGarry, that deserve our adulation: “Angela is loved; thankfully she was not put off to the side.”

Whether you are a carer or not, you can show your appreciation by following the work and campaigns of any of the supporting charities (Northern Ireland offices):

  1. Age UK @Age_UK @Age_NI
  2. Carers UK @CarersUK @CarersNI
  3. Carers Trust @CarersTrust
  4. Independent Age @IndependentAge
  5. Macmillan Cancer Support @MacmillanCancer @MacmillanNI
  6. Marie Curie @MarieCurieUK
  7. MS Society @MSSocietyUK @MSSocietyNI
  8. Parkinsons UK @ParkinsonsUK
  9. Skills for Care @SkillsforCare
  10. Stroke Association @TheStrokeAssoc @StrokeAssocNI

20140609 Carers Week - Speakers

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Book review — Touching Distance (James CRACKNELL)

20131001 Touching Distance

Reading this book was always going to have a special meaning to me, as my wife had a stroke about two years ago. Like James and Bev, my wife and I are writing a book together about our experience. We honestly came up with the same chapter layout as them — alternative narrations.

In these types of post-tragedy biographies, there are introductory chapters of the characters’ backgrounds. A get-to-know-you before the injury sequence. This is fine, but in Touching Distance, the full first half of the book is a repetitive account of Cracknell’s numerous athletic achievements. He is a very competitive individual; I get it.

At the moment of his near fatal injury, the engagement with the reader much improves, perhaps because both Bev and James are describing their separate perspectives of the events unfolding before them.

I write as a carer for a stroke survivor, so I have an empathy with Bev’s words. But I can attest that my wife would sympathise with James’s.

Bev describes learning the new vocabulary of brain injury as “taking bullets” that she would have to carry for the rest of her life. This is true.

And this unwelcomed circumstance reflects the wider dimension of changed lives. At times Bev tells James, “You’re not the man I married” and “I still miss James.” James has told the world, “I’m no longer James Cracknell.” His description of how the injury has affected his outlook is very honest and in my opinion, the most compelling part of his story.

Both mention how it’s the invisible dimension of brain injury that is more difficult to deal with. This is true, too.

Case in point was James’s description of neuropsychologist and psychiatrist tests:

“They only knew me as a patient post-accident but not the person I was or what I was capable of before the accident. So how could they impose these ceilings on my recovery based on results from generalised tests?”

We have the same complaint. In fact, neither of us were ever asked about our personalities or habits pre-injury. I still don’t understand scientifically how anyone could make predictions without examining what made a person tick before an injury.

James also recalled a qualified compliment he received after giving television commentary: “That was really good,” he was told, “especially for someone with a brain injury.” Like anyone with a disability, James said that he wants to be judged as a person, not someone with a brain injury.

With me present, a specialist once told my wife that before speaking she could tell strangers that she has had a stroke (to explain why her voice isn’t as clear). I counter-suggested that she should not, to reduce the likelihood of her being patronised. Unlike James, my wife is not famous, so it has been easier for her to present herself as herself, and not someone with a brain injury.

Both James and Bev are told that the majority of marriages fail when one has had a brain injury. It is easy to see why. Bev describes how the dynamics of a marriage of mutuality changes to one of physical and mental dependency. It’s not easy to deal with, I know. And James acknowledges this, in describing his marriage now as more of a business partnership. Both want their relationship to move back towards the centre.

Bev tells of the experience of a new friend whose marriage came undone three years after her husband’s accident. Bev asked what was the final straw? “His lack of confidence. It killed me. I couldn’t live with it.” Bev said that she knew what she meant.

Thankfully, my wife still has confidence: “If we’ve survived this, we can survive anything … it’s the ultimate challenge.”

So although Touching Distance isn’t the best written prose, like dealing with an unwanted challenge, it is worth persisting with to reach a positive conclusion and hope for a better future.