Developing an esprit de corps to transform health and social care services by Allan LEONARD 4 April 2019
I delivered the following speech at a presentation on Integrated Care Partnerships, at a conference event, “Transformation: Paving the Way Forward”, organised by the Northern Ireland Healthcare Leadership Form (NIHLF):
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.
The event was sponsored by Claire Hanna MLA, who apologised for being unable to be present.
Karin Bishop (Assistant Director, Professional Practice, College of Occupational Therapists) welcomed the several dozen attending, and displayed their fresh report, “Reducing the pressure on hospitals”.
She explained that the origins behind their campaign was their own value of providing high quality care amidst challenging financial circumstances in the health and social care services.
Bishop said that there is much good work taking place in Northern Ireland, and now occupational therapists (OTs) relieve pressure at the front door (by keeping hospital admissions low), the back door (by taking steps to prevent readmissions), and through the hospital itself (by getting patients out as quickly and safely as possible).
She encouraged us to read the square leaflet left on our seats, of the six key recommendations of their report.
The first of several intermission videos was shown; Emily’s story was one of re-enablement after a fall down stairs left her with broken wrists and limbs. (I was surprised to see her stairwell not subsequently fitted with a double rail.)
Dr Sean McGovern (Clinical Director of Emergency Medicine, Ulster Hospital) described hospitals as like airplanes: “Everyone’s been on one, but like airplanes, not everyone knows how to fly one.”
He presented a series of slides with key points, such as demonstrating that Ambulance and Emergency (A&E) pressures in Northern Ireland “are not special; there are real pressures here across these islands”.
McGovern said that based on his experience, the number of patients awaiting admission to hospital far outweighs the number of “inappropriate attenders” at A&E. He said that setting a target of a 4-hour assessment for someone who shows up at A&E, while at the same time advising people not to go to A&E if they can avoid it, is a confused message.
He also said that patient discharge from hospital into community support should involve patients and their families from day one in its planning.
Eddie Lynch (Commissioner for Older People for Northern Ireland) gave an overview of his organisation and its powers.
He highlighted changing demographics — a forecast of a significant increase in the number of older people living independently — and called for a plan to prepare for this.
Slippers matter! Lynch said that he was surprised to learn that a third of falls in Scotland are attributable to worn out or ill-fitting slippers: 120,000 falls are caused this way.
Paula Bradley MLA (Chairperson of the Health Committee, Northern Ireland Assembly) praised the COT report and its timeliness, “because Allied Health Professionals will provide a key role in realising the recommendations from the Bengoa Report”.
Bradley reflected upon her working experience as part of a social work team in Antrim Hospital. She described OTs as invaluable colleagues in assessing the needs of patients and discharging them from hospital: “We needed to work together and we did work together.”
“We do good work, and we need to replicate it all of our [Health] Trusts,” she added.
Bradley finished by saying that she looked forward to those who will come forward and give evidence at the Health Committee, in order to inform and influence the Minister of Health’s actions.
Dr Patricia McClure (Chair of Council, College of Occupational Therapists) said that there are 31,000 members in COT across the UK, with 1,000 members in Northern Ireland.
She described the uniqueness of occupational therapy, as understanding the significant impact that occupations have for people — getting out of bed, eating food, getting out, doing the hobbies and jobs that we love to do: “These are all things we take for granted until we can’t do them.”
McClure said that the Health Minister’s declared mission of “person-centred care” is “music to the ears” of OTs, as is the focus away from action targets, towards patient outcomes.
She called for a greater appreciation of the contribution that Allied Health Professionals make, and a critical role they can play in achieving long-term goals of improving health and social care.
Catherine McLaughlin (Chair, Northern Ireland Board, College of Occupational Therapists) closed the event by expressing a desire to work in collaboration and partnership: “We want to work for change, and change is pushing itself towards us.”
Afterwards, I spoke with Kate Lesslar (COT), who asked me what I thought of the event. I replied that it was good for what it was, but that the emphasis was overly about older service users, and did not feature anyone returning to work, which is another way of demonstrating “improving lives, saving money”. Lesslar took this on board, and advised me that there will be a forthcoming COT report that addresses re-employment.
There is no denying that occupational therapy improves lives and saves money. I look forward to learning more about how this benefits a broader spectrum of individuals.
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.
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.
“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):
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.
Earlier this week, Madame Oui (aka my awesome wife Beverley) went up to Parliament Buildings to address a group of MLAs at the Northern Ireland Assembly. It was a very positive and constructive meeting, resulting in some agreed steps forward (next stop: the Assembly’s Health Committee).
Beverley later remarked, “I’ve become a campaigner!” And one off to a great start. Watch out, here she comes.
Here is her first press statement:
Integrate emotional support says stroke survivor by Beverley Beattie 31 May 2013
On the back of an investigative report by the Stroke Association into the emotional impact of stroke, survivor Beverley Beattie told a group of elected representatives of the Northern Ireland Assembly that psychological and emotional support services should be integrated:
“There are two major dimensions of having a stroke — physical and emotional. The first appears well organised in Northern Ireland, from physio, occupational, and speech and language therapy.
“But I have discovered that emotional support comes much later, and it shouldn’t.
“I was fortunate with my community stroke team, but this shouldn’t be a postcode lottery, particularly for a relatively small place like Northern Ireland.”
Beverley called for the implementation of the approved regional stroke strategy, which includes adequately funding these supportive services:
“The community stroke team at Bangor Community Hospital is helping me, with a recovery approach of the Bridges Programme.
“I want to be sure that such services are available to everyone, regardless of where they happen to live in Northern Ireland.”
Accompanying Beverley was her husband, Allan Leonard, and Northern Ireland Director of the Stroke Association, Tom Richardson.
Allan highlighted an apparent disparity, whereby NHS psychological services are part of non-stroke, community brain injury teams, but not in stroke-based community stroke teams.
Allan called for this gap in provision to be closed:
“A brain injury is a brain injury, however it is caused, and all those who have had a brain injury will have psychological and emotional challenges to face.
“I don’t understand why brain injuries caused by stroke would be treated differently in this regard.
Tom Richardson added:
“The provision of clinical psychologists for the Stroke Services for Belfast as well as the South Eastern Health & Social Care Trusts are to be commended.
“We need to ensure that this is extended throughout the province, as it is vital for the quality of stroke survivors’ after-stroke recovery.
“Indeed, as Beverley has demonstrated the benefits of very positive and excellent practices here, there is no reason why we cannot connect the dots with the hospitals, GPs, community care and charity services throughout Northern Ireland.
“It really is a case of picking some low hanging fruit in order to achieve excellence in the full treatment of stroke injuries — physical and emotional — so that survivors like Beverley can reintegrate with satisfaction as fully contributing and productive members of society.”
The all-party group meeting at the Northern Ireland Assembly was held on Tuesday, 28 May 2013. Those attending included: Robin NEWTON MLA, Roy BEGGS MLA, Anna LO MLA, Kieran McCARTHY MLA, Alan McDOWELL, Tom RICHARDSON, Beverley BEATTIE and Allan LEONARD. Apologies were received from Conall McDEVITT MLA and Steven AGNEW MLA.