Benefits Cuts

 There’s a lot in the news about the proposed benefits changes and possible cuts. It’s a very worrying time for those who receive health related benefits PIP and ESA. And I include myself in this statement.

The views expressed here are my own personal opinions based upon my own experiences in applying for and receiving PIP and ESA.

There are 2 benefits available Personal Independence Payment - PIP.

And, Employment Support Allowance- ESA which is now included as part of Universal Credit - UC.

PIP is a payment for those with a disability, claimants are assessed and points awarded for how much help they require for living with their disability, and for how much their disability affects their mobility and getting around. The full mobility benefit will allow the claimant to trade their points for a motability car, specifically adapted if required.

A blue badge can be obtained if you have a certain number of mobility points.

PIP can be claimed by anyone with a disability no matter what their age and working status. Often it is PIP that enables people to remain in work, eg blue badge parking, adapted car or even a specific mobility aid/chair/scooter. Not all disabled people are sick. And many rely on the benefit to support them to live full and active lives.

Employment Support Allowance - ESA/UC is a benefit that can be claimed by anyone too sick to work, it’s important because it will provide money to live on when statutory sick pay expires, plus the government will pay the national insurance contributions that would have been paid by your employer had you been in work. This ensures that your state pension at retirement age is at the minimum. 

You can only claim ESA/UC if you are of working age.

When you are assessed to be eligible to receive ESA/UC you are deemed either still fit enough to find some suitable work. Or you are deemed too ill to work and are put into the support group category. You no longer require Drs assessments or sickness certificates in the support group category. The official terms are “have capability for work” and “have limited capability for work”.

ESA also differs depending upon whether it is income related or National Insurance Contributions related.

Applying for benefits is lengthy process for anyone and strict criteria are applied.

It’s certainly one of the biggest challenges I have encountered in my health journey.

So why am I telling you all this?

Because as with most things, it’s complicated.

Listening to Wes Streating Health Secretary discussing why changes are needed to the system, one can perhaps see he has a point, lots of people are claiming these benefits and are not entering the world of work.

He said “people aren’t getting the support they need” he means in relation to getting back to work - but there is also a deeper meaning - that of the health service not providing care for certain conditions, meaning people are just abandoned and left to survive on the system.

I personally think he is wanting to support those who have capability to work in order to help them back to the workforce. What his intentions are for those deemed to have limited capability for work, while still of working age, are as yet unclear.

There has been a lot of discussion around mental illness in the press, but of course for many people there is both physical and mental illness to cope with.

For those of us in the ME community we have been clear about the fact that the NHS has seriously undermined and affected our lives and ability to recover from ME because of the lack of investment in research and consequently viable treatments that could make a real difference to our health and consequently our wellbeing and ability to work. Many of us have lost long careers in good jobs which we are grieving the loss of. Young people with ME are denied the opportunity to even study or begin working.

And, because ME is so poorly understood by the medical profession, those assessing people with ME for benefits such as ESA/UC and PIP often don’t understand the impact it has on patients lives, despite the evidence that people supply. It’s a very difficult and stressful situation. And this is only compounded by the fact that the assessment process concentrates upon what you cannot do, rather than what you can! So that’s always a very depressing situation to go through, because you realise what you have lost and how the ME has devastated not only your life and health, but also affected that of your family and friends.

It would be so much better if a Work Capability Assessment for ESA/UC could assess what you can do? Then perhaps one would be more positive about the world of work. This applies across all illnesses, disabilities and situations.

So what do benefits pay for?

PIP is there to help people with disabilities live their lives. Whether for example that’s physical help in the home, transport costs, mobility aids, living aids, whatever is needed. And obviously running those items, so electricity, petrol etc.

ESA/UC is designed to support your living costs. Whatever those costs are and include food and fuel etc 

Of course all costs keep going up, so when the government is talking about freezing benefits, or stopping benefits you can see why people are getting upset.

So now we wait to see what the government says, and their plans to reform the welfare system. 

I re-iterate that these words are my own views.

17th March 2025

New Year 2025 - Where does the time go? And why we are still talking about Healthcare ………

 I cannot believe that it’s 4 months or so since my last post!! What has been going on? Have I been ill/away/recovered?

None of the above 

I have just been very busy and very tired!!!

And by that I mean normal tired on top of my ME fatigue. (A rare thing!)

The reason for this?

A new Labrador puppy, called Rosie.

We knew that in getting a new puppy the first few weeks/months would be hard work. I think I’d just forgotten about how much!! But I wouldn’t change a thing.

Taking on such big responsibilities when you have a long term illness is not something we undertook lightly. In fact we have planned for this for a good 4 months over the summer. We had an opportunity and decided to take it. I’m a big planner and so everything was sorted and in place and the house puppy proofed. All preparations to ease the way for me, and certainly having Andy working from home was a big help.

It also became apparent that my illness and physical stamina have become worse since we had Ludo 7 years ago. I can only reason that this has been due to the pandemic lockdown, having had a fall with the very severe consequences of sciatica and immobility which were largely left untreated for 6 months. And then all the problems of having a knee replacement which was then re-done a year later!!

Absolutely horrible and as I reflect on it now being a year since that second surgery I can feel that I have a lot of work to do to try and regain my stamina and endurance and ability to walk more than a few yards without assistance.

Unfortunately, there is no support available on the NHS for people with ME, and other than seeing my GP, who is only interested in the here and now, and keeping me functioning, rather than some months long plan to become more active and independent. 

It’s just down to me. 

And while I could find some support in the private sector, one has to consider costs and viability.

Things are afoot and change may be happening in the future for people with ME and the “NHS Delivery Plan for ME” currently being worked on by the Government and Charities. 

For too long PWME (people with ME) have had little or no specialist healthcare on the NHS. But with the publication of the 2021 NICE Guidelines for ME, this was supposed to change. But in a cash strapped, pandemic weary NHS, this has just been ignored, until work by various organisations and interested parties on behalf of the ME community, resulting in the NHS Delivery Plan. Work is ongoing.

But these are my thoughts on the current state of affairs and what needs to happen.

“There are very few ME specialist doctors across the NHS. If the NICE Guidelines are going to be implemented and , be effective, we need at least one ME doctor per health authority/ hospital and community in order for patients to access care from a medical professional (& provider) who understands their condition. And supporting that Doctor there needs to be a dedicated team of health care professionals including nurses, physiotherapists, dietitians, counsellors and pharmacists looking after these patients. Currently GP’s have nowhere to refer ME patients to, so everything falls apart at this first hurdle. And for the severe ME patients who can’t travel to see a doctor/ healthcare provider each provider needs to provide a service that goes to the patient at home. Currently ME patients pay hundreds of pounds to access care in the private sector. Some of which is regulated and some isn’t. The time has come for PWME to have good quality healthcare (regulated and managed) on the NHS. And not be left hanging, with a GP who may or may not be understanding or sympathetic and who might be disinterested or might be willing but unable to provide appropriate ongoing care”.

Which comes back to little old me, here, wondering how I can improve my own life and situation. I certainly have plans that are coming into place. And I do have a GP who sort of “gets it”. But the onus is on me.

And I’m starting 2025 slowly pacing myself to gradually introduce walks with puppy Rosie. 

Pacing means building up in very slow increments, but that’s ok.

The important thing is to keep going, understand your body and adjust your goals accordingly if you need to.

So, Happy 2025 folks, and I will keep you posted!

The dearth of healthcare for people with ME - and how an inquest verdict will change this

 This last week or so, while most of the U.K. has been following the unrest and riots, or glued to coverage of the Paris Olympics, in a small corner of Devon a very important inquest has been conducted. That of Maeve Boothby O’Neil who died at age 27  “from malnutrition caused by severe ME” (The words of the Coroner). It is beyond shocking.

I have refrained from commenting too much, because the death of a young person with ME is just devastating. One cannot imagine the heartbreak for that family, and on a personal note, it can be quite triggering, sending one back to those very dark days post diagnosis when one discovers that nobody in the healthcare system actually knows much about ME, and that appallingly in the 21st century, there is no treatment or cure. 

It is only recently that diagnostic criteria for ME have become more focused. ME is now officially recognised as a neurological condition.

In 2021 the NICE Guidelines were re-issued, removing the harmful Graded Exercise Therapy (GET) in favour of a more patient focused approach to treating the symptoms of this little understood condition.

The guidelines also included a symptom severity and disability rating scale, ranging from very mild to very severe.

https://www.nice.org.uk/guidance/ng206/resources/myalgic-encephalomyelitis-or-encephalopathychronic-fatigue-syndrome-diagnosis-and-management-pdf-66143718094021#page7pages 7-9.

I consider myself very fortunate to only be moderately affected.

“Fortunate”???  “Only”???  I hear you ask ……..

But as I have mentioned in previous blog posts, it’s horrible, it’s disabling, but some are far less fortunate and are severely affected by ME.

They are usually confined to bed, intolerant of light and noise, have little social interaction, and rely heavily upon family to care for them, because they are often incapable of doing so themselves.

But it’s tragic to think that ME can be implicated in the death of someone with severe ME.

The week of the 5th to 11th August happens to be Severe ME week, where the plight of such severe cases is highlighted (by others not so severe) in order to raise awareness.

We have to raise awareness because, as I have said before, ME gets very little press and attention in the world. And the medical community world wide, not just here in the U.K. doesn’t know how to treat people with ME, because they don’t understand it, there’s only symptom management and no magic bullet.

Unlike other more well known illnesses such as Parkinson’s, MS, Cancer, and Diabetes, which are just as disabling and life changing, ME has not received the research funding and general health education of professionals, and care within all healthcare settings. 

I’m sorry to say ME has been neglected and ignored.

(Even I didn’t believe my own diagnosis, which for a Nurse of some 43 years standing was strikingly revealing - I’d never been taught about ME).

So Maeve’s inquest has come at a very pertinent time.

Things have to change. And the ME community, charities, and healthcare professionals who do understand and care for people with ME, all very much hope that the inquest findings will galvanise those concerned into action.

Andrew Gwynne, Minister for Public Health, said at the inquest that Maeve had “fallen through the cracks in the system”. Her father stated that she had fallen into a “deep gaping hole”.

However you look at it, this cannot happen again, ever.

I conclude with Andrew Gwynne’s statement 

“Every patient deserves to have their condition understood and treated to the highest standard “.

My thanks to those who have spoken up for people living with ME, at this inquest and in its wider reporting. We’ve got to keep sharing our stories, because someone will listen.

Sue Hardy 10/08/2024

A very English Heatwave

I wrote this at the end of last week, and then completely forgot to upload it! I blame the sleep deprivation!! 

We have just experienced a week or so of exceptionally high temperatures here in my part of the world.

When the daily average is in the upper 20’s degrees Celsius. And it doesn’t cool down at night.

It affects everyone and everything, I understand that. Having ME just makes life somewhat more difficult. 

One of the unfathomable aspects of how ME affects me (and many others) is my ability to regulate my own temperature.

I always used to be a “cold” person, Andy would hate it if I warmed my cold feet on him, and patients would ask me to warm my hands up after experiencing my chilly mitts on them when giving a bedpan!!

So to have the table turned has taken some coping with. Obviously being a woman of a certain age didn’t help, but when HRT helped the flushes but NOT this awful feeling of being so overheated I had to take my ME into account. And it turns out to be one of the myriad of unexplained symptoms. Great!!

So when a heatwave hits I have to really think carefully about my day, how I pace myself and take extra steps to ensure that I can stay cool and hydrated.

We don’t have air conditioning, but the car does so that can be helpful.

There are fans all over the house, strategically positioned for maximum comfort wherever I happen to be. Including 2 in the bedroom which you may think is excessive but it’s also about having a quiet appliance that can stay on all night and not disturb my already disturbed sleep.

The flasks that keep drinks cold are amazing, and 2 years ago when I had my knee replacement in the middle of one such heatwave, icing my knee was fantastic!

As I have said before, pacing is about energy management, so in very hot weather the body is working harder to maintain a normal temperature and dispel the heat. Normal people feel more tired in hot weather, so add to that ME and very limited energy supply and recovery, it soon becomes apparent that other activities have to be curtailed in order to use the precious limited energy on what’s important.

Then gradually as the weather cools down again to a normal British Summer, a more normal baseline of activity can be resumed.

So, what happens to all the jobs and chores etc that didn’t get done because I was conserving energy? Well, to be honest they often just get left and added on to the bottom of the list. I can’t play catch up because that would mean using energy that I don’t have to complete the tasks, which would put me into relapse, meaning more jobs and activities don’t get done.

Life with ME is a daily balancing act. Working out what is necessary, but also trying to do some things that are nice for me, and not just household chores or cooking the dinner. I’m good at delegating, and my family are 100% brilliant at taking more of their share and helping me.

So this is why I share this blog.

To illustrate tiny snippets of my life living with ME, a condition for which there is no treatment, and which currently is largely ignored by the NHS and the Department of Health. I hope for change, and if by reading and sharing my blog I can go some way towards improving things then I will have done my bit.

So heatwave? Yes, but not something that everyone can enjoy. Thanks for reading.

Proceeding with extreme caution - when strength is required

 Bob Marley has a famous quote 

“You never know how strong you are until being strong is your only choice“

It’s coming up 5 weeks until my crash/flare started. I didn’t leave the house (other than to walk out the back door and sit on the patio) for 16 days, and didn’t drive my car for 21 days.

Quite something for me, as I always have some small errand to run or somewhere to go. Appointments were cancelled and errands picked up by Andy & Peter.

I even changed a rare face to face GP appointment to a phone call - I can imagine the receptionists face as I said that I was too ill to go in person.

So for 2 weeks I did zilch, nada, nothing.

All the time thinking about what needed to be done. The temptation when you begin to improve is to just go back at life at 100%. However I knew that if I did so, I would soon become incapacitated again.

The mantra had to be “Proceed with caution “ do not under any circumstance do more than you have planned and take life very very slowly.

The family soon got the hang of it, yes Mum was up and dressed but definitely not firing on all cylinders, physically or mentally. They would be called upon to serve up dinner after I had managed to put it in the oven, or carry something downstairs. 

My brain fog was in its element especially first and last thing , the malapropisms were hilarious, humour is so important when your brain thinks one thing and your mouth utters something different!!!

Even writing addresses for letters and parcels has been problematic I discovered weeks later as things don’t arrive ……

Pacing has been the subject of an earlier blog, but this has been the first time in very many years that I have had to be absolutely meticulous and methodical in my daily allocation of energy.

Made even more tricky by ongoing health issues with mine and Andy’s elderly parents. This probably being more of a psychological drain on energy than a physical one, but all the more important to the matter of pacing.

I was horrified when I discovered that Mum had had a fall and not told me until 3 days later when she could conceal it no longer, and had sworn certain people to secrecy. An absolute nightmare!!

Hard decisions have had to be made about certain plans and whether they could be kept or not attended. That’s so hard because my social life is not exactly packed when I am functioning at my “normal” level. People understand but it’s still frustrating.

Thankfully we have social media, and the technology to remain connected via various ways that don’t require physical presence. 

So here I am at four and a half weeks, just beginning to plant up my pots with the bedding plants that I bought on the day I really should have read the signs and not gone plant shopping! Most of them have survived, they have been kept hydrated in some garden trays and whilst the slugs and snails have had an all you can eat buffet by our back door, they have been beautiful to look at in their temporary location.

For me, not having the energy or inclination to do stuff because I felt so ill, is not new. That it went on for a good 2 weeks was a big shock, and then a further surprise is that I am at this point still not back to being able to do as much as I could before the crash/flare.

And I am left asking myself, “when will normal service be resumed?”

Will I ever get back to that point?

I’m confident that I will, I just have to give it time.

When ME Symptoms Flare

 Living through a ME Flare of symptoms 

People have different names for it, the time when the Post Exertional Malaise (PEM) just gets worse and worse, to the point that you just have to stop and rest.

In fact many only refer to a relapse of symptoms when the crash or flare has been going on for a period of time.

You may be wondering why, when I have been writing about pacing and working within my symptoms, do I need to write about when pacing isn’t enough?

Sadly for those of us with ME, pacing isn’t always enough. And symptoms sometimes rear their ugly head, regardless of any mechanism that we might put in place to prevent it. 

I find myself in just this situation this week. And it’s hard.

When you are floored by symptoms so severe that all you can do is rest and sleep. Life has to go on hold, because you have to allow yourself to recover, but also because you are incapable of doing much else.

People sometimes describe that you know you’re really ill because there can be £100 on the floor, but you are just too ill to pick it up.

This statement flits through my head as I lie on the bed, cuddling the dog (they ALWAYS KNOW when you are ill), dozing and listening to the sounds of the house going on without me.

Ludo, my lovely Labrador, keeps trying to lick me all around my face, ears and neck. The places where my lymph glands feel like sore rocks, how does the dog know this?

As well as all the swelling of lymph glands, I have a myriad of other symptoms that are basically just my usual ME symptoms but just 10 fold worse than normal. It’s an effort to move, turn over or get out of bed. Walking downstairs requires immense effort and concentration. Luckily I have Andy and Peter here to cook, and to bring me the occasional mug of tea upstairs.

The days pass in a haze of sleep and the normal house routine.

Appointments have to be cancelled and rearranged, other people have their lives disrupted because of my incapacity.

As I lie on the bed I do a check around my body, any glimmer of a change? No, not yet. So lie here I must. We don’t have a TV in the bedroom so in the evening I am in my recliner chair. The dog a little less confused because this is normal, everyone watching the TV. With the volume as low as we can tolerate because I have a sudden severe aversion to loud noise.

People ask, will I sleep at night after sleeping all day? And I say yes, I can, because at the moment my body is telling me to sleep for England, I need little encouragement.

As the days progress family get told that I am not well, nothing to worry about it’s “just the ME”, more plans rearranged or cancelled.

The headache, muscle aches, joint pains and swollen glands just continue. The regular medication is taken. There’s nothing extra to take unless you want to be completely spaced out, they don’t suit me I’ve discovered!! 

Hopefully after some days of full rest, symptoms will improve and the flare will begin to resolve. 

Then begins a period of very careful pacing, my day and my week.

Very very gradually resuming my normal routine and schedule.

A month from now you probably won’t know anything was wrong.

But for now, I must rest, and rest some more. 

What causes this flare of PEM?

Overdoing things physically? Excessive emotional response or stress?

An infection or some other “normal” illness that throws the body out of equilibrium? 

Being too social? Too sensitive?

And my answer? Any or all of the above.

Hopefully one can try and avoid it happening again, but sometimes it’s just a very unique set of circumstances that have caused the situation.

It’s part of life with this mysterious illness.