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Anita Kiernan PoTS UK Volunteer NHS Commissioner Former Nurse TheImpactofPoTSandadjustmentsforwork A patient/employee perspectiveBackground Healthy childhood/teenage years, very fit & active ➢ Symptoms since 1995 Presenting mostly as frequent unexplained collapses, lightheaded aged 16) spells and exercise intolerance ➢ Investigations and “Anxiety”, ”Hormones”, Postural Hypotension (1997); “Benign diagnosis Sinus Tachycardia” (2002) ➢ Impact of symptoms on Affected nurse training and early career in district nursing, as well work as personal & social life ➢ Deterioration and Increasing frequency and severity of postural pre-syncope episodes Disability (20-30 severe lightheaded episodes including collapses per day) Standing tolerance reduced (less than a minute or two) New cough syncope and reflex syncope symptoms (e.g. yawning, stretching, reaching up or looking up); flying intolerance. Increasing heat & exercise intolerance, gut issues, brain fog, fatigue.Background ➢ Provisional PoTS Loss of driving license due to unpredictability of diagnosis (Oct 2007) symptoms. 5 months off sick from work. ➢ Redeployed (Feb 2008) Moved successfully to NHS Commissioning role with Reasonable Adjustments ➢ Confirmed PoTS 5 days of Autonomic tests after birth of baby. Formal diagnosis of NHNN (Oct 2009) PoTS, Reflex syncope and Joint Hypermobility Syndrome. ➢ Treatment plan 2009-20 Non-pharmacological treatment & lifestyle changes Fludrocortisone, Slow Sodium, Midodrine, Octreotide injections Exercise rehab, energy conservation/fatigue management & CBT ➢ Discharged to GP Reduced medications over 3 years, remained stable just on (Feb 2020) midodrine and slow sodium. Driving license approved in 2018. ➢ 2020-22 progress Positive impact of home working – symptoms well managed, episodes are weekly-monthly. Not felt this well for 20 years.Work and Adjustments Undertaking meaningful employment or activityis a vital part of all care plans for managing Long Term Conditions and to support good physical and mental health. Understanding my conditionled to greater focus on what I could do, rather than what I couldn’t. • It enabled a life-changing but emotionally difficult decision to change my career: to accept my current limitations but use my skills in a different way. • Important to acknowledge that not everyone will feel supported or able to have such choices, for personal, financial or family reasons. • Also important to recognise that PoTS is a syndrome with different presentations and many people will continue successfully in their current roles, perhaps just with some additional support and understanding. Good clinical support through early diagnosis and effective aftercare can make all the difference to outcomes, including employment and the impact this has on wellbeing.Work and Adjustments Raising awareness of PoTS amongst clinicians means that: • It is more likely to be recognised early, which may reduce deterioration (and time off work) • Person-centred rehabilitation and support can be provided (not just medical treatment) Diagnosis might not have offered a cure, or even any certainty of improvement, but it enabled me to access the help I needed as an individual, in order to work.For example: • Occupational Health could provide advice to my employers (re-deployment and recruitment) • I could make an Access to Work application for disability employment support For me this involved taxis to/from work for several years due to difficulty with: ◦ Standing in a queue ◦ Standing on busy public transport ◦ managing temperature change, ◦ frequency of collapses – safety and vulnerability on public transport/walking by the roadsideWork and Adjustments I worked in partnership with my GP, consultant and OccupationalHealth to document my needs and how these could be met with reasonable adjustments, when I was redeployed in 2008. Examples included: • Office chair with head & arm support for when I felt faint • Stool to raise my legs • Placing a seat next to the photocopier to avoid standing for long periods • Suitable location of filing cabinets/height of shelves/locker • Small desk-top printer to avoid continual postural change, getting up & down • Desk fan / seat near window for temperature control • Access to a lift rather than stairs due to exercise intolerance • Work from home one day per week to support energy conservation • Flexibility with work hours if needed (make up time later if needed breaks)Work and Adjustments I also chose to write a care plan and share this with my manager and other staff. The purpose was to: • Avoid undue concern or anxiety for others if they witnessed particular symptoms • Describe what actions would help me best if they wanted to help • Support swifter recovery from episodes by reducing my own worries. Many workplaces now offer Workplace Wellbeing toolkits or Wellbeing Action Plans. These can help staff to: • Describe health concerns or disability-related needs • Discuss and document the support required to maximise wellbeing (and therefore productivity) at work • Provide a vital resource to aid good communication between employees and line managers which results in better outcomes both for individuals and the employer.Barriers to working well Ineffective or inconsistent implementation of the Equality Act, corporate policy and/or values Lack of individualised support (listening to staff) to understand what support is needed to do the job effectively, rather than making judgements based on inadequate information or stigma or myths. Reduced employment or recruitment opportunities • Due to organisational expectations e.g. presenteeism in the office or expectation of travel across sites • Impact of fatigue, pain, medication or uncontrolled/variable symptoms upon career ambition and confidence Previously agreed adjustments not being honouredfollowing organisational re-structures and changes of line-management Inadequate support from GPs and clinicians • E.g. Delays with sending referrals, or reports for employers; lack of joined up care pathways • Lack of knowledge or support for Access to Work application/Disabled Bus Pass /Blue Badge applicationsImpact of Reasonable Adjustments Reasonable adjustments– and reasonable line managers – enabled me to maintain continuous NHS employment for the last 20 years • Able to gain promotions, despite collapsing frequently throughout the day for over a decade • Only 1 sick day and no disability-related sick leave in the last 3 years. My manager strongly believes that if health and disability needs are supportedcompassionately and with reasonable adjustments, then individual work performance will usually follow. • People will feel empowered to succeed rather than feel hampered, unsupported or undervalued. • The focus is on the work outcomes, not on PoTS. “My responsibility is to help create an environment within which you can reach your potential. That does not mean an environment which assumes you to be less capable or productive than anyone else, but which is necessarilyindividualised(Ric Taylor, NHS Trafford CCG)Impact of Reasonable Adjustments Employees need managers who will listen, take action, and lead by example. • A supportive line manager has been a necessity: “Reasonable adjustments” goes beyond having policies or just writing things down, but in making sure things happen. • Many clinicians listening today will also be line managers, who can advocate for their staff, and implement simple adjustments to help improve their experience at work and keep them more well. If you are a manager, have you discussed these things with your staff who have LTCs or disabilities? Often the things that people need are minor changes with minimal or no impact on others: • Such simple steps can be life-changing for the employee, who will feel valued, included and respected. • The impact of this on mental health and self-esteem can’t be underestimated, nor the commensurate positive impact on physical wellbeing. As a clinician, are you supporting your patients to express their needs and gain adequate workplace support?How GPs and Clinicians can help: Awareness of PoTS, to support early diagnosis GP Guide: PoTS on a Page - PoTS UK • Small UK study in 2014: Average of 7 years to diagnosis • Awareness of links with EDS, CFS, MCAD, auto-immune conditions, and more recently Long Covid Effective liaison with employers Be a good employer if you have staff with PoTS “Stick with me on this journey” – I was a person with “medically unexplained symptoms”, which can now be explained. Syndromes and hidden disability are notoriously challenging, both for clinicians and patients. Words Matter: Be mindful of the impact of language Kindness costs nothing. The outcome can be life-changing. Thank you to all of you who are helping people like me!