Meet Kathryn: Mum of three, Financial Director, Daughter to Dorothy (89) : Follow her caring journey

May 12, 2023

“Caring for Elderly Parents Seminar”

I had the honour of presenting my “Caring for Elderly Parents Seminar” as part of Bosch’s “Befit” project last week. I was overjoyed that such a renowned organisation offered this informative lecture to their staff.

During this session, we followed the imaginary narrative of Dorothy, an 89-year-old woman who is having short-term memory loss, and her daughter Kathryn, a divorced mother of three grown children who works as an NHS ward manager and lives 20 miles away.

This is not an unusual story, and many employees will be familiar with it. Over the previous two decades, the workplace has changed, with more women working and rising to higher positions.

Employees usually have ageing parents who require varied degrees of care, attention, and support from their children.

What helped Kathryn cope with her stress?

Kathryn requested a care needs assessment from the local government.

Dorothy passed the financial tests and was labelled a “Self Funder,” so she began paying for a care package.

This initially helped Kathryn, but Dorothy’s memory deteriorated and she began falling regularly at home. Kathryn applied for the “Flexible working” position.

Employee flexible working rights

To be eligible, employee’s must have worked for the same company for at least 26 weeks.

Employers are required to respond to inquiries in a “reasonable” way.

Flexible working examples include:

Job sharing
Working from home
Part time
Compressed hours
Flexitime
Annualised hours
Staggered hours
Phased retirement

Information on Flexible Working

Kathryn was allowed to work her hours around her Mother’s obligations at the office. Kathryn began work at 7 a.m., took a break throughout the day to see her mother, and then continued her job later.

Dorothy got more forgetful during the following six months, the house became progressively messy, and Dorothy suffered a series of falls.

Kathryn needed some time off work to assist Dorothy in locating further assistance.

Kathryn inquired about unpaid carer leave. However, because this has not yet been approved by the House of Lords, it is not yet a legally protected right in the workplace. It will, however, be shortly.

Kathryn went to her doctor and was given a “Med3 Fit Note” for being unwell with stress. This alleviated her stress and allowed her to care for her mother.

Kathryn also investigated potential allowances to which she could have been entitled.

Information on Carers Allowance

Carer’s Allowance is the primary welfare payment available to carers. Even if you don’t consider yourself a caretaker, you may be eligible to claim it.

Information on attendance allowance

Attendance allowance is a payment for adults over the age of 65 who require assistance with personal care or supervision due to a sickness or disability.

Dorothy was admitted to the hospital following another fall and illness. She did not regain her mobility, and Kathryn had used her days off to look at nursing homes.

Dorothy was not safe to go home and had lost her competence to make this decision, so Kathryn felt a great deal of guilt.

Lasting power of attorney and Deputyship

Kathryn regretted not arranging Lasting Powers of Attorney since she now had to apply to the Court of Protection for Deputyship to act in her best interests for health, welfare, and finances.

Dorothy remained a “Self Funder” and was responsible for the costs of her nursing care, and all of her capital was considered in the financial evaluation.

Recent plans to implement a financial cap have been delayed until October 2025. The limit indicates the entire lifetime contribution to a single care. The maximum is currently set at £86,000.

Despite oral medications, Dorothy’s pneumonia worsens again. Kathryn takes emergency leave to see her mother in her final days. Kathryn contacts the GP and is referred for bereavement therapy after the funeral.

Kathryn took unpaid compassionate leave after her mother died. Employees can take time off for dependant emergencies. A dependence might be a spouse, partner, kid, grandchild, parent, or someone you care for.

Carer relevant rights:

Carers (Recognition and Services) Act 1995
Employment Act 1996
Work and Families Act 2006
Equality Act 2010
Mental Capacity Act 2005
Mental Health Act 1983

Kathryn was despondent when her mother died and saw her doctor about medication. Her GP suggested Hospice counselling and online CBT. She took unpaid leave to attend her counselling appointments.

Kathryn’s mood improved with lifestyle and grief treatment.

Kathryn thought about her mother and took efforts to help her children feel more in charge.

The trip with her mother inspired her to organise Lasting Power of Attorney and have honest dialogues with her children about her future care desires.

She considered how she had been undersupported at work. She retired early and plans to travel.
Kathryn retired early to tour the world.

As a community hospital GP, I watched how caring for ageing parents stressed their children. I think employers should be flexible about leave, not punish workers for taking time off, and point them to helpful services.The “Caring for Elderly Parents” training showed that employee carers might share their knowledge by organising workplace support groups.
Contact me for seminar details.

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How can you ensure good end of life care for your relative living with frailty?

Apr 26, 2023

I read two intriguing books about ageing and dying during the Easter weekend, both authored by doctors who practise in Geriatrics and Palliative care (1,2). These works represented my personal experiences as a general practitioner who worked in community hospitals.

They both contend that in our culture, medical improvements such as vaccination campaigns, antibiotic discoveries, improved sanitation, and workplace health regulations have both protected us from death and made us frightened of it. As a result, as physicians, we sometimes value longevity and life preservation over quality and comfort. Individuals sometimes die in hospitals after being subjected to useless examinations and treatments, rather than at home or in the more comforting settings of a hospice or care home.

Those of us who have elderly relatives undergoing treatment for chronic disease, cancer, or who are becoming increasingly frail with increased falls, reduced mobility, weight loss, and dementia processes may believe that another hospital admission is not necessary and that being cared for at home (or in a care home) is the preferable option.

The acute hospital atmosphere, which may be sterile and perplexing for older persons living with frailty, is less preferable than familiar surroundings, with friends and family visiting at ease.

In England, men have an average life expectancy of 79.3 years and women have an average life expectancy of 83.1 years. Although the path of deterioration in fragile older people is less predictable than in individuals with advanced disease, death is unavoidable for all of us.

Repeated hospitalisations, severe old age, increased fragility such as weight loss, decreased mobility, increased falls, and an increased need for care all indicate that someone is approaching the end of their life.

Discussing our future intentions and preferences for end-of-life care in advance makes it easier to follow through on them.

Prior knowledge allows you, as a relative, and the surrounding healthcare team to ensure that all necessary documents (for example, RESPECT forms) and prescriptions are in place so that if there is a rapid deterioration, everything is in place to enable the correct treatment and keep the patient comfortable at home.

Other simple efforts, such as ensuring family members and caretakers have the correct phone numbers to call in and out of hours, can help decrease concern and uncertainty.

When is the right moment to broach this subject?

Many scenarios, in my experience, prompt talks about death and dying and may be utilised as a gateway to converse on this issue, which, while difficult, should not be avoided.

Circumstances that may provoke a discussion regarding end-of-life care preferences:

Following a care crisis characterised by a decline in health and function
Upon admission to a nursing home or rehabilitation unit
Following repeated hospitalisations (which are often detrimental in patients living with frailty)
A close friend, family, or spouse’s death
TV shows that investigate or address end-of-life issues
When Finances, Lasting Power of Attorneys and Wills are organised and discussed

Explore what “Matters Most”

My work in frailty has taught me that everyone, no matter how elderly or infirm, has a unique set of distinct priorities. Understanding what is most important to the individual is essential in developing personalised care plans.

It is preferable to discuss these issues while your loved one is feeling well and in control, rather than during a crisis. Utilizing RESPECT papers and literature as an aid might help facilitate these (often tough) talks.

The “Gold Standards Framework” and what it means for your relative

The gold standards framework is a register used in primary care by your GP to identify patients who maybe at risk of deterioration and dying within the next year.

It is becoming more widely accepted that “Frailty” is a clinical diagnostic, and persons with moderate to severe “Frailty” in their final year of life should be included in the Gold Standards Framework. If your relative is added to the register, they will be discussed in frequent meetings and a more proactive approach will be taken in the form of advance care planning conversations, which will include their desires if they decline and where they would want to die.

What about during Out of Hours and in Hospital?

As we all know, the NHS’s Computer infrastructure is not interconnected across sectors. But, systems are in place to enhance after-hours access to your relatives’ notes and documentation of their customised care plans, RESPECT forms, and advance care plans. Nevertheless, some paperwork, such as the RESPECT form, should accompany your relative. In the event of an unforeseen incident, it may also be good to have a copy of an up-to-date concise brief summary from EMIS or SYSTEM one. The GP surgery would be able to provide these brief summaries.

Key Teams involved in End of Life Care to connect with/ have the number for:

Healthcare teams work in many different places it is worth exploring which teams will be involved in your relatives care and how you access them – it maybe via one single point of access number or multiple numbers

Examples of key teams:

District Nursing team
Palliative care team
Neighbourhood team
Social services
Older adult mental health team
GP surgery
Out of hours team (usually NHS111)

Symptom control at the end of life

Common symptoms of patients dying of frailty are those such as:

Constipation
Anorexia
Confusion
General weakness
Pain
Pressure sores

These symptoms can be distressing and can often go unmanaged if not recognised. Pain is underrecognized in patients who cannot express themselves and tools such as the “Abbey Pain Scale” can be used by the healthcare professionals to identify pain and its severity. Due to poor appetite and lack of fluids some patients with severe frailty can become agitated due to severe constipation, this can be relieved with enemas and laxatives and relief provides an immediate calming effect. As patients are coming to the end of their lives much of the medication they were once on is now irrelevant and more likely to cause side effects. A medication review is imperative for the removal of unnecessary medication or medication that cannot be taken orally and commence medication that may ease the symptoms via different routes (for example a patch on the skin, or a needle under the skin). Additionally input from nursing staff in the form of ensuring comfort in positioning, insertion of catheters (if necessary) and skin care becomes important to maintain comfort.

“Just in Case Medications”

“Just in case” medications are used to treat symptoms in the last few days of life. Symptoms such as pain, breathlessness, agitation and respiratory secretions are treated with medications such as: morphine, midazolam, levomepromazine and hyoscine. Often delivered via a needle under the skin and an automated syringe.

Their use is to treat symptoms such as breathlessness, pain, agitation and increased respiratory secretions. Often the uncertain and sudden nature of deterioration in patients living with frailty means that it is important to prescribe these medications in a timely manner. Often a deterioration will happen out of hours and access to these medications then is more problematic.

Sometimes patients living with frailty do not need any of these medications but having what is needed at hand “just in case” can be comfort in itself and reduce anxiety and uncertainty at a challenging time.

Bereavement care and grief

Caring for an elderly relative and going on the journey of their decline and death can be overwhelming. Taking care of yourself and your mental health is important. Inquire what bereavement advice and guidance is available to you. There will be local support available via hospices and there are national charities such as Cruse who can provide support and guidance (link provided below).

Finally: Three Key questions to ask your healthcare provider (with your relatives consent)

Do you think my relative is in the last year of their life?
Is my relative on the Gold Standards Framework?
Does my relative have a RESPECT form and an advanced care plan?
When would be the right time for a prescription of “Just in Case” medications?
Should they have a copy of their brief summary in case they worsen out of hours?
What key contact numbers do I need?

Useful resources/websites:

Compassion in Dying

ReSPECT | Resuscitation Council UK

Home – Cruse Bereavement Support

References:

Microsoft Word – H387 Abbey Tool.doc (gloucestershire.gov.uk)

My story as an expert patient – How do you advocate for yourself in healthcare?

Apr 19, 2023

We frequently see patients who have discovered and read about their medical condition or suspected medical condition on the internet. I was one of those patients.

The “Expert Patient”

Who is the expert, the doctor with a medical degree and significant training or the patient who has lived with their ailment for 20 years or more?

I was diagnosed with an extremely uncommon cardiomyopathy 20 years ago. Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC) (1) is a significant cause of sudden adult death syndrome (SADS). I went to the internet, despite the fact that it was still in its infancy when I was diagnosed (around 2001).

My biggest concern was determining when I would be able to resume sports activities, but after reading a few ARVC-related internet articles, I realised this was the least of my concerns. The everyday emotional torment and upheaval that followed was horrific. I was hospitalised to my local hospital after a particularly horrible night of palpitations and chest discomfort. I was 21 years old and afraid. The respiratory specialist sought to dismiss me the next day on the post-take ward round because I was back in normal rhythm. Based on my research, I refused to leave the hospital and requested that they contact my cardiologist in Cambridge and show them the previous night’s electrocardiograms (ECGs). I feel my tenacity saved my life.

When the ECG indicated serious irregular heartbeats (ventricular tachycardia), I was moved to Papworth for an ICD and medication adjustments. The medication modification improved my heart rate management, but having the ICD as a safety net was a big comfort. Footballers and other athletes, such as batsman James Taylor, are sometimes affected by this illness (2).

Being a patient and having this experience, I believe, increased my ability to listen and put myself in the shoes of a patient. As a healthcare professional I find sometimes, at the end of a consultation you can feel the dissatisfaction emanating from the patient (and their family).

It is vital at this time to take a step back, listen again, and potentially investigate something you had not previously explored. That will take time, but it might be vital.

Doctor and Patient: Therapeutic relationship

I am not suggesting that patients be aggressive in their encounters with healthcare personnel. The ideal relationship is one of mutual trust and cooperation. A connection in which the patient feels listened to and valued is therapeutic in and of itself. Along the way, I’ve met several outstanding healthcare experts. The finest conversations I had were usually those in which I felt heard, believed, and given hope and encouragement.

Practical steps to empower you within your consultations

Because knowledge is power, learn as much as you can from credible sites like:

https://www.patient.info.

Bring a trusted friend or family with you if you are feeling overwhelmed and unable to stand out for yourself. During a consultation, a friend or family might remain calmer and more focused.
Attend screening programmes, follow-up visits, and communicate with your healthcare practitioner.
Due of the rarity of my ailment, I joined Facebook groups – I am a member of numerous ARVC-related Facebook groups. They hold conferences and meet-ups, but most importantly, they provide a place where others “understand you” and your symptoms. I moderate the ARVC and pregnancy Facebook group; we are a global community that provides support and knowledge.

References and links

1. Arrhythmogenic cardiomyopathy – BHF
2. What is ARVC, the disease that ended James Taylor’s career, and what other sportsmen have been affected? (telegraph.co.uk)

Diagnosing Dementia

Nov 27, 2022

When your relative starts to show signs of memory loss or odd behaviour it is very concerning.

You may wonder if they are beginning to show the signs dementia and what this means for them and their future care.

To diagnose dementia of which there are several forms your relative would need specific memory tests, blood tests and brain scans (MRI or CT scan).

Home Visit Healthcare has a network of professionals who can visit you or your loved one at home to undertake these tests and provide you or your loved one with the results, treatment and management plan.

Early diagnosis can be beneficial for several reasons:

Early treatment
Care planning
Ability to access other resources

Alternatively, there may be other reasons for your relative’s memory and behavioural issues which are equally important to treat and manage.

Please get in touch if you have any further questions or want to explore how Home Visit HealthCare’s Independent Practitioners network can help you.

A Guide to Independent Home Visiting Healthcare Costs

Nov 27, 2022

One of the important questions service users and their relatives have when they contact Home Visit Healthcare have is around the cost.

Home Visit HealthCares’ Independent Practitioners are passionate about older adult healthcare and this type of healthcare can be complex.

Prices vary depending on the issue. For example, if your relative needs ear wax removal the price is from £65 pounds for one ear and £80 for both. This is unlikely to need to be repeated within 2 months and is a one-off payment.

If you or your relative needs more in-depth Physiotherapy and Dietitian assessment; costs start from £80 for the first assessment but further follow up maybe needed hence there will be a larger cost overall.

If you or your relative requires older adult mental health or neurology assessment for conditions such as Dementia, Parkinson’s disease, Motor Neurone Disease the costs increase, particularly when blood tests, scans and Consultant home visits are required, and we can provide you with a bespoke quote for this.

For an early diagnosis of dementia (including Full physical examination, review of past medical history, Memory tests, MRI or CT Head scanning and Blood tests costs will be approximately £1995)

Although costs may rise for the diagnosis of certain conditions, there can be a benefit from early diagnosis and management, such as earlier treatment and management and the ability to gain access to other resources. This can help with planning and management and our goal is to help you or your relative live longer and live better in their own home.

We also have an Independent Social Worker who provides care needs assessments, advice on funding issues such as the Continuing Healthcare Assessment framework and again although the costs for Independent Social Care Advice starts from £60 per hour, there can be financial benefits in the longer run from gaining advice and guidance early.

We understand cost is important and are happy to discuss your needs and concerns and signpost where appropriate if we cannot help you.

Do not hesitate to get in touch to discuss your concerns further and we would be happy to explore options with you.

Author:

Dr Kirsten Protherough Founder Home Visit Healthcare

Meet Kathryn: Mum of three, Financial Director, Daughter to Dorothy (89) : Follow her caring journey

“Caring for Elderly Parents Seminar”

What helped Kathryn cope with her stress?