A Marathon of the Heart: Alzheimer’s, Friendship, and Motion is Medicine

This morning, while walking my dog through the village, I saw a woman running towards me. As she got closer, I realised it was Sarah—beginning her long 20-mile training run ahead of the London Marathon in just a few weeks.

I think about Sarah often, and as she continued running past me today, I knew I had to write this.

Please read to the end. And if you can, please consider donating.

This isn’t a typical blog entry—it’s a personal story. One about Alzheimer’s, about exercise, and about an unexpected friendship.

Sixteen years ago, I started a fitness company. I’ve always believed in the power of movement and community. Over the years I led Nordic Walking classes—from gentle wellness walks to tough Ski Fit  bootcamps—all outdoors in the beautiful Chilterns.

We didn’t just build strength; we built friendships.  A community that supported one another through life’s ups and downs. One of my proudest achievements is that even now, though my focus has shifted to the care home, those groups still meet. They continue to move, support, and care for each other in ways that go far beyond fitness.  Even the “Wellness walkers” walk and talk every Wednesday, each of them being over 75 years old.

During those years, Sarah joined my classes. She came to boot camps and Nordic walks. We live in the same village, and our children went to the same secondary school—though they were in different years. Back then, we were acquaintances more than friends.

Then, at the end of 2021, my phone rang. It was Sarah. I admit, my first thought was that one of my dogs had escaped. But it wasn’t that.  Sarah explained she’d been speaking with her brother about her mother, Monica, potentially moving into our care home. Neither of us could believe the coincidence—my care home is over an hour from our village, and yet here we were, unexpectedly reconnected.

I’ve always felt wary about having the family member of a friend live at the home. But I didn’t know Sarah that well back then, and after assessing Monica—who, at the time, was living just around the corner from me—it was clear we could meet her needs. Monica was a good fit for our home.  I had some nervousness that I knew Sarah well but as a professional and somewhat guarded individual I felt we would respect the new roles that we found ourselves in.

Of course, we care deeply for our residents—but I also believe in caring for the families. Supporting them as they face the challenges of watching a loved one move from independence to 24-hour care.  Dementia, as many know, is not a one-size-fits-all condition and is a description of symptoms. It manifests in many ways—sometimes gently, sometimes devastatingly. And eventually, we are there beside the family as they say their final goodbyes. That’s why it’s so important to me that we’re the right fit for both the resident and their family.

One of the things that saddens me most is when people say, “I couldn’t cope with dementia—I’d rather die.” Dementia is not a single story. Yes, it can be devastating. But I’ve seen, time and again, that people with dementia can still experience joy. I’ve seen smiles, laughter, love. Even if someone doesn’t recognise their loved ones, they can still feel happiness—and that matters.

But I’ve also seen the cruelest face of dementia. Monica’s Alzheimer’s has shown itself in one of its harshest forms. It’s not for me to share the details here, but the toll it has taken—physically and emotionally—has been immense. Monica has defied doctors’ expectations, her body still fighting even as the disease progresses.

These past few years have been some of the most challenging of my career, and the resident that challenged the most was Monica. Supporting Monica has meant balancing the needs of our resident, her family, and my incredible staff—while trying to advocate for better support in a healthcare system that is, quite simply, not equipped to care for those with advanced Alzheimer’s. Sarah and I have stood side by side through incidents that have tested both of us.

We went from being acquaintances to walking a painful path together. From school gates and fitness classes to navigating the complex, often heartbreaking world of Alzheimer’s care. Back then, when our biggest worries were teenage angst, we couldn’t have imagined this shared journey ahead. That Monica would need residential care—and that I would be the one providing it.

Last year, Sarah told me she’d decided to run the London Marathon, with her daughter, to raise funds for the Alzheimer’s Society—in honour of Monica.

Sarah wasn’t a runner. But she told me that running had become her escape. A way to process what was happening to her mum.
Ironically, I’d planned to run a few training sessions with her—but eight years of running a care home haven’t been kind to my fitness.

So instead, I’m writing this blog and also sharing it with all my friends from my fitness business. Because if you’ve ever felt the power of movement in your life—physically, emotionally, or socially—then I hope this story resonates.

Motion is medicine, in more ways than one.

Please, give what you can. Give for Monica. Give for those living with Alzheimer’s, and for the families who love and care for them every single day.

And if you're near Lime Tree Court on the morning of the Marathon—April 27—come along to our coffee morning. Join us. Move a little. Donate if you can.

And above all—keep moving.

https://2025tcslondonmarathon.enthuse.com/pf/sarah-shah?utm_source=share&utm_medium=whatsapp

Every Story Matters - the Covid Enquiry

 It’s a year since I last updated this blog.  I hope that this will be the last blog entry I ever write about Covid.  I have just written this for the “Every Story Matters” website which aims to ensure everyone can provide their input into the Covid enquiry.    I hope that this is read by those taking part in the enquiry, but I will continue to speak up for all who receive, and work in Adult Social Care.

EVERY STORY MATTERS…

As an owner and manager of a small family run care home I experienced first hand the impact of the Covid pandemic on Adult Social Care. Although I could tell my story about PPE shortages, I could speak about Local Authorities offering significantly increased weekly fees to take untested residents from hospitals, thus risking whole care homes to outbreaks when they were hugely lacking in the medical support required, I want to focus on the what I believe are the two key issues arising from the pandemic in relation to the support given to care homes and their residents;

 

1.     The Government, Department of Health and Public Health England demonstrated a woeful lack of understanding about how to support care homes.  Guidance was useless and demonstrated a total ignorance about the challenges faced by those working in, living in and supporting care homes.

 

2.     The Government used the pandemic as a fact finding exercise demanding information which at many times was unnecessary, unworkable  and impacted our ability to support those in need, this information gathering exercise was one sided from care homes to the Government.

 

My care home specialises in the care of those living with moderate to advanced dementia.  We have up to 19 residents and a staff of 25.  I took the decision to “lock down” earlier than the official advice.  I was able (with enormous amounts of effort and cost) to secure adequate supplies of PPE.   My focus as a (very hands on) owner of a care home was to keep our residents safe, ensure reassurance and communication to families, adhered to policies and to support the staff as they cared for our residents.

 

Throughout the pandemic what became clear for all care homes is that those making the decisions, those putting a “protective ring around care homes” were woefully lacking in understanding about what the sector really required in the most difficult of time in decades.

 

We were lucky in that we were outbreak free during 2020.

 

Our home being outbreak free changed in 2021, and this one example I believe sums up the lack of support but more importantly the enormous lack of understanding of the sector that Government agencies were supposed to be supporting.

 

In January 2021 one member of staff tested positive for Covid after working a night shift.  In a matter of days the outbreak took hold.. numbers of residents and numbers of staff testing positive started increasing.   Very quickly our staff numbers were depleted as staff began testing positive.  During that time there were very clear guidelines about how long staff were to be off work, residents were to be “quarantined” to their rooms.  We were bombarded with donning and doffing guidelines of PPE – including how to use a flimsy apron that covered one third of your mid section but not your arms because of course if someone sneezes of coughs droplets only land in the tiny areas covered by the flimsy aprons.

 

We followed the guidelines regarding how long staff were to be off work.  About a week into the outbreak and half the staff were testing positive.  Just over half of the residents.  I had worked a night shift with a member of staff who had just returned from having Covid, ( truth be told she had probably returned to work too early).  It was a tough night with many residents unwell (albeit with mild symptoms but unwell nevertheless).  At 7am that Monday morning the phone started ringing, every single carer due in that morning was now testing positive.  We were on our knees, but had no option than to keep doing what we were doing.

 

And then we started getting the “support”….. which was as much use as a chocolate teapot

 

The capacity tracker had been updated and I had done all the necessary reporting to the Local Authority and Public Health about the outbreak.  Families were all advised.  But over that week as the staff had begun calling in advising that they had tested positive the calls increased from the Local Authority “Resilience team” and Public Health England.  In terms of support their suggestion was to get “Agency” staff.  This is something we have always avoided and we are proud of our long standing dedicated team, agency staff are no golden bullet, it would take at least four days training to get a new member of staff fully inducted and safe to care for our residents.  By the skin of our teeth we somehow managed, but it was the phone calls that highlight the lack of understanding, it felt that every single phone call during the outbreak from those that were supposed to be offering support were trying to point the finger about what we were doing wrong.

 

The ignorance of those providing support;

 

This phone call will be etched in my memory forever.  That Monday morning after learning that the entire planned care shift was not able to come in Public Health called – the lead for our area as they wanted to understand why our Covid rates for staff and residents were “increasing so quickly”.   I had called on Friday evening, but the Local Authority Resilience team and the Public Health team only worked weekdays because clearly Covid outbreaks only happen in the week (something which I was further exasperated.

 

PHE “Can I ask if you understand how you and your staff know how to wash your hands”

 

Me “Yes we do”

 

PHE “Have you taught your residents how to wash their hands”

 

Me “Well, we are a home specialising in the care of those living with dementia -  a very large proportion of our residents are non verbal, some cared for in bed, most are disorientated to time and place  and unable to tell you if they would like a cup of tea and those that have capacity to understand the question not would probably answer that of course they know how to wash their hands”

 

PHE “OK, well perhaps put a poster in each of the residents bedrooms about hand washing so that they have visual cues.  What about donning and doffing – do all staff know the correct process”

 

Me “Yes we do, but can you answer when resident A who is covid positive comes out of their room to have a wander and goes into residents B room, what takes priority? – do I carefully Donn and Doff my PPE or do I stop A going into B”

 

PHE “Oh, but residents who have Covid are to be quarantined - that’s what you are doing wrong”.

 

Me “How do I quarantine a mobile resident with dementia who is totally disorientated to time and place”

 

PHE “Oh,…… well you must don and doff correctly.  You should move all the rooms of the residents so that those with Covid are in one area of the building and the ones who are clear of covid are in another area”

 

Me “I beg your pardon – with two members of staff you want me to move residents rooms – personal effects, air flow mattresses, hoists etc etc in the middle of an outbreak – what about the residents, aside from the logistics of being able to do this, it is totally unfair and upsetting for the residents”

 

PHE “Well this is what the guidelines say, you must quarantine the residents, you must keep them together and you must ensure correct handwashing techniques.  We will check in on you tomorrow”

 

After that call a resident pulled my mask off to “see my face”.  Another resident who at the time was 98 (she is now 101 and still with us) appeared in the corridor from outside her room with her frame I said to her “X, please go back to your room you have a virus which we need to make sure other people don’t get it”

 

Her reply?

“Don’t talk rubbish, there is nothing wrong with me, I am going to the lounge.  I’ve survived a war, I will survive this”

 

Survive she did, and I am delighted to say from that outbreak and the following two outbreaks we lost no residents to Covid.  In part that was undoubtedly due to vaccinations, but the other reason was that all of us who work so tirelessly within our care home was that we cared for our residents the way we knew best.

 

Those who supposedly put a ring around care homes were clueless, they sat in their ivory towers working Monday – Friday trying to discharge Covid positive patients to care homes, not providing adequate PPE, and writing guidelines which were unworkable, unrealistic and of no use.

 

I would love to educate those in the Department of Health and willing to offer work experience within our care home whenever they would like, please get in touch.

How Social Care can help with the current NHS crisis

 The news reports of the current crisis in the NHS are hard to read.  There are no easy solutions, but anyone working in health or social care is aware that Social Care is critical to providing support to our NHS.

The current crisis in part is due to lack of beds and lack of funding in Social Care.

I want to help.  I want to support the NHS to free up beds within our hospitals.  I have been in a position to do so.

I have had two spare beds.  It is the right thing to do to focus on those in hospital who are medically fit to discharge.

BUT.... this is first had experience...

1.  I get daily emails from one of our local hospitals asking for placements for those with moderate - advanced dementia who are medically fit to discharge but who require support with ALL aspects of personal care - washing, eating, drinking, moving.  On December 14 I confirmed I could offer a bed to a person who was fit to discharge, they were a perfect fit for our home for a number of reasons and I was looking forward to meeting the lady.  The fee the nearby Local Authority was willing to pay ---- £650 per week.  They said they may be able to offer more and would get back to me....They never did.  This is for a long term residential dementia placement.  £650 per week would not cover staffing costs alone.  This is also far far less than our Local Authority pays for dementia residents.

BUT it got worst.....

2.  Five days ago I received an email from "Discharge To Assess" - Hospitals local to us had declared critical incident and urgently needed short term placements to enable longer term placements or support to be found for those medically fit to discharge but unsafe to send home.  I emailed on a Friday between Christmas and New Year to confirm I could help.  I called the number over the weekend.  I have called this week to confirm I have places.  It is the right thing to do.  No-one has replied to my emails.  No-one has answered the phone (this is from the Local Authority on behalf of the Hospital) I was hopeful they would be back to work on Tuesday....I still have not heard

3.  All care homes have to fill in a daily "Capacity Tracker" so that hospitals and Local Authority are aware of spare capacity.  I have done this.  It clearly does not work, or no-one uses it.  I know this is not a cost issue as I know I am one of the cheaper homes within the County and we are a "spot contract" provider.

I have kept beds empty to allow for hospital discharges.  But I can wait no longer and so the rooms will be filled with new residents whom we can provide a loving and secure long term home for.  

It breaks my heart when I hear that "there are no beds available to discharge to". 

Surely this would be easy to fix..... why are the discharge teams not speaking to us, and why is there not realistic funding???

Looking for Residential Care? Where to start…..

 

For some time I have been thinking about writing this.  I receive many calls a week from people looking for care homes.  The majority of times these people know very little and ask me to start at the beginning about the care system.  With this in mind and based on future social care reforms taking place in October 2023 (at the time of writing this) I thought this would be useful.   It is fair to say that rarely do people plan to move into care homes, it is generally not the sort of thing the we discuss with our loved ones, or consider for ourselves.  So… if you are looking for residential care / considering it for your loved ones this may help.  This is my personal opinion on how to look for a care home.  (This focuses on choosing care for older loved ones rather than those with learning disabilities or complex health needs)

 

The decision to consider residential care for a loved one is often filled with apprehension and at times, guilt.  It is a difficult decision and if possible see as many homes as possible.  Remember to put the person who is moving into residential care at the heart of the decision – choose homes that will suit them rather than what you may like.  Without stating the obvious, the care is the most important thing.  Fancy wallpapers / gyms / cinema rooms….are unlikely to improve quality of life. The care and the staff who work in the homes are the most important thing to consider.  

 

 

1.      How to choose then….

 

Without stating the obvious, involve your loved one with the decision.  If they do not have capacity to make the decision, then a Power of Attorney for Health and Welfare should be in place. If it is not then arranging a placement for someone who does not have capacity is much more tricky and the Local Authority / adult social care team and other healthcare professionals will need to be involved.

 

Make a list of how the person likes to live or used to like to live;

-        Urban or rural

-        Pets?

-        Homely environment or more “hotel” like.  I aim to make our home feel like a home, all who live and work together I regard as my family.  Not all homes are the same, and home like environment do not necessarily suit everyone.

-        Lots of people around or quiet spaces for alone time?

-        Brand new fixtures and fittings and matching crockery (yes, people do ask….)

-        Dementia Home or not?  If people in the home are living with dementia it is important that any residents who do not have dementia are aware that they are living in a home with residents who live with dementia.  I strongly recommend that if your loved one lives with dementia you look for a home that specialises in caring for those living with dementia.  Some residential homes will cope with dementia symptoms to a certain level, but may not cope with all aspects of how dementia can progress in an individual.  

 

Unless you are going to visit more than once a week please do not rule out homes based on ease of visiting for the occasional visitors.  If your loved one moves into residential care, unless you plan to visit very regularly the most important people are going to be those doing the care rather than whether the journey to visit for the grandchildren four times a year takes one hour or three…….   The important thing is the home suits your loved one, prioritise that above your travel time.

 

Some new build homes will often advertise “cinemas” “gyms” “beauty areas”.    Ask yourself whether these areas will really be of use to your loved one?  An easily accessible garden, a staff member who will do chair based activities and a hairdresser who visits once a week may be more appropriate than purpose built areas which may be used for marketing… and are likely to considerably increase the cost.   Choose a home based on what your loved one would like NOT on what is important to you.

 

Super duper en-suites, Wi-Fi access may be important to you, but if your loved one lives with dementia realistically they may not be using the internet and an en-suite forever.

 

Make sure you meet the staff.  I am the owner of a care home, I think about my residents, staff and the home 24/7, I have access to the realtime care records 24/7,I cover shifts, but I am not there every day, make sure you speak to people who are actually caring, not just the person who is doing the “marketing”.  I ensure that anyone who visits our home meets the staff on shift.  Ask about staffing levels, speak to the staff, ask about the amount of agency staff.    Continuity of staff will be important to ensure your loved one gets to know those who care for them.      Make sure you see the residents – if you are shown empty rooms that should raise alarm bells, what is being hidden?  

 

But a word of caution, care homes are under immense infection control regulations, depending on Covid rates at the time, visits may not be possible. In this case, ask to see videos or have a zoom video call.

 

 

2.      Care Home or Nursing Home?

 

Residential Care can be provided in either care homes or nursing homes.  The CQC (Care Quality Commission) that regulates all healthcare providers will register a residential care provider as a “Care Home” or “Nursing Home”.  Nursing homes must have registered nurses on site 24/7.  Care Homes do not have registered nurses on site at all times.  Nursing homes can therefore provide care for those with complex medical needs.

 

However, when it comes to Dementia, care homes or nursing homes may be considered.   

 

Dementia Care is often provided within Care Homes. Previously called “EMI – Elderly Mentally Infirm” this is not a description which is used nowadays  (this meant the home specialised in the care of those living with dementia) and as such it is hard to differentiate homes that specialise in the care of those living with dementia.  Some care homes will not be able to provide care for those living with moderate / advanced dementia symptoms, some may not be able to care for those with significant mobility issues (requiring hoisting to get out of bed for example).

 

Some care homes will have separate “wings” for those living with dementia, other homes will have all residents in the same areas and will not segregate based on level of need.  

 

When considering a home, remember this is likely to be your / your loved ones last home.  Find out what level of need the home would not be able to cope with.  Go into specifics about this – you do not want to find out that a home is unable to support your loved one one / two / three years in the future.  

 

3.     Funding!

 

If an individual has savings or assets over £23K then, at the current time, they will have to fund their own residential care.  If an individual has a home then this is considered within the £23K limit (although not if they have a spouse who is still living in the home.  Continuing Healthcare (“CHC”) is sometimes provided for those with very complex needs who require nursing care and this is fully funded by the NHS,  However, the thresholds for eligibility for CHC are very very high – advanced Alzheimer’s does not normally meet the thresholds.

However as of October 2023 the rules change!  At the time of writing a Local Authority will contribute to part of care costs if someone has assets under £100K AND there will be a lifetime limit on care costs of £83K.  But this is just the cost of care – not accommodation / food / utilities.  As an example, if an individual is paying for residential care of £1000 per week, probably around £600 of that will be the cost of care, so the £83K lifetime limit would apply to care costs, not the full weekly fee.  

BUT… no fees will be paid / costs of care considered unless the Local Authority is aware of your / your loved one’s needs and have essentially confirmed that they require a residential placement.

  If you are looking for care, or you have a loved one in a residential setting at the current time who is self funded it is essential that you ensure the Local Authority are aware of them.

 

In terms of costs, there can be huge variety in costs.  I do not believe that cost equals quality of care…..

 

4.     CQC Ratings / Reviews / Open Days

 

CQC reviews should always be read, they will give an overview of the home.  BUT… do not get too hung up on the ratings.    I have personally visited homes with “Outstanding” ratings that I would never consider recommending, and I have also visited homes that are “Requires Improvements” that I would recommend.  Inspectors have a very difficult job to do, and see a snap shot of a home at a moment in time, some of the big chains of care homes have people who solely focus on how to get brilliant CQC ratings,….   Read reports in full and decide whether you share the same concerns or whether a report is perhaps “too good to be true”.

 

Reviews can also be “created” and unlike trip advisor / trust pilot generally negative reviews are not as widely accessed or provided.  So take all reviews with a pinch of salt.

 

If a home has an open day it means they are desperate to fill beds.  This is not necessarily a bad thing, but it should raise some questions,  generally there is a shortage of care home spaces, a home with lots of vacancies may not be a good thing.  If you go to an open day, make sure you speak to people who actually do the caring, not a marketing / front of house team. 

 

5.     Respite or short stay?

 

I get tens of calls a week about respite stay, particularly in the summer.  This is something we rarely offer, respite stays are in high demand and there are not many available, particularly for those living with dementia.  It take a few weeks for a home to get to know the resident and for the resident to get to know a home, respite stays can often be unsettling and should be considered carefully.

 

BUT… I always say to new residents and their families to view a move as a respite stay – if they don’t like us, then there is no lengthy notice period, ensure that this is in place with any new home.

 

For someone living with dementia who may have some awareness of a move, but not their level of need, I suggest that any placement is initially communicated this way to the individual. 

 

6.      Start Early

 

The amount of times we receive calls when people say “what do you mean you have no rooms”.  I have even had one person turn up outside our door because “Well I thought seeing you in person may mean you find us  a room”.    Understandably people often do not start looking for care homes until they are desperate, and then they may not have many homes to choose from.

 

Particularly if a loved one has dementia and you think they may need care in the future, please start looking now and start speaking to lots of homes..

 

 

7.      And finally

 

Expect to be “interviewed”.  Not only do I want to learn about the resident, I want to learn about the family and visitors.  Whenever a new resident moves in there is always a period of adjustment for the resident, but also for their families.  We expect lots of calls, and we are on hand to guide you and support you through the transition.  However, sadly this can often at times mean that a well meaning loved one can be somewhat demanding, and sadly this can often be directed at more junior members of staff.  My residents and staff are my family and as such I want to ensure they are happy, safe, loved and respected.  Any good Manager / Owner will also be interviewing you to ensure that you will fit with the home.  

 

Get to understand the structure of the home, ask who is onsite at all times.  Is the Owner available at all times, do they know what is happening?.  Does the Registered Manager spend most of their time on the floor with the residents – not hidden in an office?.  In my opinion I feel that anyone managing and owning a home should be involved and hands on, and you should be able to contact them direct.

 

I hope that this helps, remember to put your loved one and their needs at the centre of this decision.

 

Your family has to wear a facemask at home... at all times.....

 Two years since the start of the pandemic.  

We know that those that live in care homes are particularly vulnerable to Covid.

We also know that Covid is airborne, and once Covid is in a care home it spreads.

We understand about Infection Protection and Control.

Residents in care homes have received Covid vaccinations and two boosters.  

We have done, and continue to do, all we can to protect our residents, but we now have to focus on making our residents lives as happy and content as possible.

We strive to make care homes a home.  Not a hospital, not an institution, not a regimented routine filled controlled sterile environment.

Our care home is a home, the residents are part of my family, the staff are part of the family.  Our care home is full of love, laughter, friendship, sometimes noisy, sometimes quiet.  Full of residents family and friends.  It is our residents HOME.

So.... two years on.... imagine if you were told that in your HOME your family have to wear facemasks at all times,  everyone you see has to have a facemask on.  This also of course means that you can not enjoy a meal, snack or drink side by side with anyone in your "family".

Two years post the start of the pandemic life outside care homes in the UK is pretty much back to normal. Those who live in care homes only see masked faces of those who support them, protect them, love them and care for them.  

Guidance is explicit for all of us who work in care homes - we have to keep our masks on at all times.  For those who visit, the guideline states it is "encouraged", but if providing personal care full PPE is required. Yet, if our residents leave the care home, no facemasks are required.

Does this make sense to you??

Covid and Care Homes - Four things I believe

  

• The restrictions in care homes are now more dangerous than the virus itself

 

• Life needs to now return to normal, and Covid should be treated as a disease along the same lines as flu.

 

• The government needs to listen to the care home community – how care homes interact with government officials needs to be streamlined to drive efficiency and not bureaucracy. 

 

• People with and without dementia need to be treated differently and can’t be bucketed into one care home community,

 

I have now seen first hand the devastating impact on residents wellbeing from being isolated in their bedrooms.   Testing, isolation, visiting restrictions, definitions of “outbreaks” within care homes.  I spend hours and hours each week writing policies, guidelines, filling in forms for the Department of Health, answering questions from Local Authorities.   All the time doing this I could spend with my residents, supporting staff, speaking to families.  I don’t feel supported by the Government, I feel let down.

 

The vast majority of Care Home Owners and Managers want to support and encourage visiting, we want life to return to normal for our residents.  In the last few weeks restrictions have lifted for the general population, but for care homes we are under inconsistent stringent rules;

 

1.      Just two positive covid cases warrant an outbreak, and as such this means that we have to close to all but just one visitor per resident.  Homes also have to isolate vulnerable residents to their rooms, and due to the risk of this homes are unable to take new admissions, including hospital discharges.

2.     We know testing is far from infalible, but if it is required, then the costs of tests should not be paid by visitors.

3.     NHS frontline staff (including A&E and district nurses) are required to test twice a week, all social care staff are required to test before every shift – why the inconsistencies?  It has to be remembered that all social care staff from 11 November 2020 legally had to be double vaccinated.  This was proposed for NHS staff but as we all know, this was then postponed in April due to concerns about loss of staff.  All those who worked in Social Care shared the same concern, but our concerns were not listened to....until a sudden U- turn last week (too late, tens of thousands of care staff had already left).

4.     The Department of Health / Health Protection Agency needs to consult with care home owners, and it needs to listen.  There is a woeful lack of understanding about the needs of residents within care homes and the catastrophic impacts of the current guidelines that are in place.

 

My experience of an outbreak came a little over six weeks ago when Covid entered our home I have to admit that after two years of remaining outbreak free, I felt proud.  I knew that we were doing all we possibly could to avoid the virus entering the home.  I was aware of every piece of guidance, we were testing more that was actually required. Our visitors process was stringent. 

 

We followed every rule, we were rigorous with testing, but Omicron found a way in.   Two cases in a 14 day period, either staff or residents are defined as an outbreak as per Health Protection Agency rules.  Two staff members tested positive three days after working, despite negative LFT’s at the start of their shift.  A day after they tested positive, we tested all residents, three residents were positive.  We have no way of knowing whether the residents gave it to the staff, or the staff gave it to the residents (those residents had been having visitors).

 

We felt prepared, we had outbreak plans in place.  We knew what had to come next.  Nothing could have actually prepared me for what happened next.  Within a seven day period half of all staff and eleven out of eighteen residents tested positive.    Staffing levels were stretched, but as a team we pulled together, the “Business Continuity Plan” was enacted.  We maintained safe levels of care and I am proud of what we achieved.  But, I have never known physical and emotional exhaustion like it and it is an experience I never ever want to repeat.

 

The brilliant news is that, thanks to triple vaccinations, all staff members who tested positive were either asymptomatic or had mild to moderate symptoms.  All were back at work within 10 days. Of the 11 residents, all made a full recovery.  Some were entirely asymptomatic (in the middle of the pandemic I was frequently told “there is nothing wrong with me, this is ridiculous” by one 99 year old resident who was desperate to come out of her room, she was entirely without symptoms despite testing positive). Some residents were poorly, but all apart from one has fully recovered, one is not back to her previous health, but this would have been no different to her getting a cold / stomach upset.  However, I fear that the longer term impact due to the isolation for two weeks in their rooms on some of the residents will be more detrimental than Covid.   For those who live with moderate to advanced dementia, being isolated in their bedrooms for even a couple of days has significantly negative impacts.

 

I have however had time to reflect and digest the experience.  I am left, frustrated, angry and let down by the Government and Department of Health.

 

Every single day I need to complete something called a “Capacity Tracker”, this centrally reported database tracks resident occupancy, staffing levels, sickness, testing, sickness pay, how staff travel to work (!).  Since having an outbreak as a home I am now under the spotlight.  I don’t feel supported, I feel checked up on.    What has become crystal clear is that that the Department of Health is woefully lacking with its understanding of care homes.    Each week I am called by the Local Authority, I have to answer questions about numbers of staff testing and residents testing – I am told that this is to “check track and trace data”.  I am then questioned about staffing levels, testing and infection control training.

 

In the midst of our outbreak I had many calls with the Health Protection Agency (previously Public Health Team but in the middle of a pandemic they decided to change their name).  I asked questions and required support.  Of course these calls and emails could only be answered on working days between 9am and 5pm... .  I took a call from a Health Protection Agency member who was concerned about the infection level.  This is how the call went;

HPA “Can I confirm you are following all PPE guidance and donning and doffing correctly and all staff have been trained ”

Me “Yes” (I did not have time to take the call I was caring at the time)

HPA “Can I confirm that this happens at ALL times”

Me”Well, can I give you  an example – D (who has dementia, has tested positive and is mobile) comes out of her room frequently, her movement mat sounds to tell us she has left her room.  I am with another resident.  I leave the other residents and run to D.  She is moving along the corridor going into another residents room.  Should I spend 20 seconds putting on a different flimsy apron and new nitrile gloves and visor while she wanders into two or three other resident’s bedrooms, or should I go to her straight away, hold her hand, reassure her and take her back to her bedroom”

HPA …. Long pause….. “Hmm, yes that is a challenge, but you must keep PPE on and don and doff correctly.  Can I ask, have you taught your residents hand hygiene and told them how to clean their hands and also told them to put on a mask”.

 

Aside from the fact that as a 90 year old woman, teaching someone how to wash their hands could be construed as entirely patronizing, the lady in question has advanced dementia, and would definitely not be able to follow instructions.

 

The list went on…. On another call I was told that I should move residents to different bedrooms to keep those with covid together in one area.  Can you imagine moving residents with dementia to different rooms in the middle of an outbreak when staffing levels are stretched in the extreme fai.liming to consider the impact on the resident.

 

The Local Authority called me during the outbreak.  They had no suggestions, other than “call an agency to get agency staff if you have staffing challenges” but they did have another form for me to fill in….   They will be visiting next week, undoubtedly to check my infection control processes.

 

But, the outbreak is over and I hope that immunity levels are now very high as a number of residents and staff have had Covid in addition to triple vaccinations.  Several of us, despite being exposed to covid on numerous occasions during the outbreak have remained covid free.  Lateral Flow Tests are not infallible – people were positive on PCR’s and negative on LFT’s and people.  Some residents we know were infectious prior to LFT’s turning positive.

 

On February 9^th our outbreak was declared officially over and visiting resumed – not just for essential visitors but for everyone.  On February 23^rd the Government released it’s “living with covid” guidelines, outside of care homes life returned to normal.  Care Homes are still subjected to testing, visitor restrictions, PPE.  Our most vulnerable is society are being “protected” from a virus that may possibly kill them, but so would a cold, stomach virus or other infection, but their mental wellbeing is not being considered.  I want my residents to see their loved ones, to hold hands, to cuddle their grandchildren, to see my face.  As a carer, I want to care, and I want to enjoy a cup of tea and a piece of cake with my residents…something I have not done in two years as I am now allowed to take my facemask off.    A cup of tea, a cake, holding hands -  Is that too much to ask?

 

The protective ring of steel around care homes now feels like an ever tightening noose.