UA-79233833-1

50shadesofsun

News and Opinions about MS, Health & Disability

Health: Debate over best system will continue

There is no doubt that I prefer social healthcare. That means I support healthcare funded by countries, such as the UK and Spain, rather than needing to buy private health insurance, as in the US.

Now, that is not to say either healthcare system provides superior medical care. It is purely about the costs.

health

An American protester calls for the country to have one health plan.

Neither system is entirely free as workers pay something from their salary or wages as contributions toward the cost. But there are other big differences. Social medicine is free at the point of use, with no charges for doctors’ treatment or hospital care. The same cannot be said of private health care, where even GPs charge fees and you need health insurance. In fact, in the US, not having health cover has legal penalties.

Despite that, many people find the cost of insurance to be prohibitive.

I find it strange, and more than a little ironic, that insurance costs got worse after the US passed the Affordable Care Act, otherwise known as Obamacare. How can ‘affordable’ equal more expensive? Some monthly premiums escalated from less than $60 a month to more than $300. And others cost a lot more.

Let me be clear, I am not saying the American system is flawed. It is just not for me.

Prescription costs a question of health

One item of contention in the UK is the cost of prescriptions. First, you must recognise that the UK IS made up of four healthcountries. A trip to the pharmacist in England will cost you £8.60 per prescription drug or item.  But prescriptions in Scotland, Wales, and Northern Ireland are all free.

Since Lisa and I moved to Spain almost two years ago, we have been surprised by the low prescription charges here. Yes, we do pay – but just cents, certainly not excessive.

The standard of care here is excellent but, as anywhere, it can vary from doctor to doctor. We recently chose to change our doctor to another within the same health centre. It was so simple.

Last week, I had my first appointment with our new doctor. He listened to what I had to say, prescribed a couple of medications, and, as I have MS, he referred me to see a neurologist. Stopping at reception on the way out, I left with a confirmed appointment with a neurologist. It will be my first in 12 years.

* * * * *

Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

* * * * *

50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

No Comments »

Care cuts put those in need at risk

Vulnerable people are at risk because social work budgets cuts make it impossible to prepare meaningful care packages. And that is besides cuts to the government’s welfare benefits.

It’s the job of social workers to assess what support someone needs to keep them safe and able to live independently. Community Care magazine and the Care and Support Alliance, of which the MS Society is a member, surveyed social workers. The survey asked about the challenges they face trying to get people the care they need.

social workersIn response, the social workers criticised the devastating impact cuts are having on people who rely on care and support.

Almost 500 UK social workers took part in the survey. Their comments reveal the incredibly difficult position they’re often in, as they increasingly have to restrict or remove care entirely. What’s more, that is due solely to lack of resources, as local councils struggle to balance their budgets.

One social worker said: “[There is] strong pressure from my line manager and commissioners to reduce costs as a main priority.”

Meanwhile, another commented: “Colleagues constantly battle to keep packages at an adequate level to support clients.”

Social workers tell of appalling cuts in care

Their descriptions of what cuts can mean in practice to people who need care were appalling:

One wrote: “A person with hoarding issues and a tendency to eat rotten food had their shopping and housework call cut, resulting in an admission to hospital with food poisoning.”

Another response said: “The person requires support with walking to the bathroom, but due to the cost he is now required to contribute towards it. [Instead,] he has decided he would rather have the risk of falling than [pay for] an evening call.”

MS Society chief executive Michelle Mitchell, said: “This report lays bare the realities social workers face thanks to a system that hasn’t been properly funded for decades. Our own research shows that too many people with MS are bearing the brunt of cuts. One in three [are] not getting support with essential everyday tasks.

“The government has promised to improve the social care system and additional funding and reform has to come quickly. People who desperately rely on care shouldn’t be forced to keep paying the price.”

                                                                                 * * * * *
Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.
                                                                                 * * * * *
50shadesofsun.com is the personal website of Ian Franks, a Clinical Writer with Healthline, the fastest growing health information site. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

1 Comment »

In Moscow for HSCT: Part 3 of Phoebe’s Story

orange
Two weeks ago, I introduced you to Phoebe Scopes, the British woman who was the first international multiple sclerosis patient to receive hematopoietic stem cell transplantation (HSCT) in Moscow. Today, in part 3, Phoebe takes us with her to the A.A. Maximov Department of Hematology and Cellular Therapy, at the National Pirogov Medical Surgical Center in Moscow.
moscow

Dr Fedorenko with Phoebe during her treatment. (Pic: Phoebe Scopes).

Ian: When did you go?

Phoebe: On Sept. 17, 2012, my husband and I stood in arrivals at Moscow airport with two suitcases and a piece of paper with the address of Maximov hospital. As the first international patient to be assessed and treated, Dr. Fedorenko (Denis Fedorenko, MD) was waiting to meet us.

We made our way out to the airport car park where a group of taxi drivers stood waiting for their next job. Now about 6 p.m. on a September evening in Moscow, it was cold and the light was disappearing fast. I was extremely weak and felt completely vulnerable so, I was very grateful that my husband had his wits about him as he negotiated the fare and we got into the car.

The hour-long journey from the airport to the hospital felt like a white-knuckle ride. With his seat in an oddly semi-reclined position the driver used the roads as though he was going around a speed track and by the time we got to the crowded motorway, the driver along with other motorists, hopped on and off the hard shoulder to avoid queues.

I decided to pull the large hood of my top over my entire head before closing my eyes and minutes later, I was laughing nervously under my breath as I remembered the words of my neurologist. He was almost certain that HSCT would kill me, but treatment was now really looking like the better option here.

It was late evening by the time we arrived at Maximov hospital. This was a big hospital with a number of entrance gates around it that were now locked.

Remember that the driver did not speak English and neither of us could speak enough Russian to have a conversation, but he got out at one of the gates and pressed an intercom to speak to somebody, anybody on the other end. Getting back into the car, the driver made his way to one of the smaller wings of the hospital where the doctor and his then temporary assistant greeted us.

Ian: What was the quality of treatment and care received?

Phoebe: As mentioned earlier, the hospital was just at the beginning of their experience with international patients, so there were still some areas that were not yet confirmed, such as accommodation for carers. Dr. Fedorenko was not happy to leave my husband to check in to any one of the random hotels nearby, so invited him to stay in my room for the initial assessment period and if results were favorable for treatment, the doctor assured my husband that I would be well looked after if he needed to return to the U.K. during my isolation period of HSCT.

I grew more and more impressed with the quality of medical attention I received from the doctor and his dedicated team once on my own. The doctor spoke good English, but his staff did not speak any, yet we all found ways of communicating.

treatment

Valuable symptom translation document for nurse and patient understanding. (Pic: Phoebe Scopes).

Before the main treatment started, the doctor suggested that he’d create a sheet. On the sheet, he would list (in English) symptoms that often occurred during chemo and next to each symptom, the Russian translation in the next column.

Dr. Fedorenko worked tirelessly and wanted to make sure that in his absence, the nurses would know what was happening, how I was feeling, and whether they needed to call him. Nothing was too much trouble for the doctor and this put me completely at ease.Before the main treatment started, the doctor suggested that he’d create a sheet. On the sheet, he would list (in English) symptoms that often occurred during chemo and next to each symptom, the Russian translation in the next column.

I didn’t know what to expect being on my own where no one else spoke English. I thought I would be very bored during treatment … sick and bored because reading books or magazines triggered headaches and fatigue and my dexterity was labored, making writing difficult. So, I decided to use my laptop to keep an account of my HSCT experience in isolation, in Moscow.

With my design background, I combined illustrations with daily entries, which kept me as busy as I needed to be and provided good distraction when things were tough. I called this “my diary in isolation.”

I soon got to know all the staff; the cleaners that left NO surface unattended and nurses working on the ward and I watched as they maintained the highest levels of care and dedication required when looking after seriously sick patients. I will never forget their kindness.

transplant

Phoebe with catheter inserted, ready for stem cell collection. (Pic. Phoebe Scopes).

In the days after receiving my last round of chemo, I was given back a whopping 10 million stem cells that were collected and harvested before the matter of ablating my old immune system was initiated.

A day later, the first thing I noticed was that my head “fog” and fatigue had lifted to leave behind a great deal of clarity and energy. My cognitive abilities also fully returned, allowing me to add simple numbers again, work out general problems in my head and multitask without the need to find a dark room or sleep afterward.In the days after receiving my last round of chemo, I was given back a whopping 10 million stem cells that were collected and harvested before the matter of ablating my old immune system was initiated.

My vision was clearer, my balance was better and my limbs felt lighter. As a result of these physical improvements, I walked a few meters unaided.

Before I was finally discharged, I felt surprisingly energetic and remember thinking that this was not how someone that had just received chemotherapy should be feeling. The doctor, seeing my new-found energy, carefully reminded me that the cocktail of drugs such as antibiotics, steroids and pain killers taken during treatment, were still to an extent supporting me.

He advised me that once some of these drugs were reduced or removed completely, I would likely experience a turbulent period of extreme symptoms that would continue while I built a new immune system.

Dr. Fedorenko with Phoebe as she prepares to fly home. (Pic: Phoebe Scopes).

Dr. Fedorenko with Phoebe as she prepares to fly home. (Pic: Phoebe Scopes).

The day that my husband and I left the hospital to return home, Dr. Fedorenko waved us off as the taxi drove away. I remember how he stood watching the car until we were out of sight. I know that he was already worrying about how I would manage the flight home. I was wrapped up from head to toe for the journey and wore a surgical mask, and while I was looking forward to going home, I was strangely already missing my isolation room that had been my secure home for six weeks.

In part 4, we join Phoebe on her return home.

This article, written by me, was first published by Multiple Sclerosis News Today.

strap-new

ian-skype_edited50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

No Comments »

Fear is real as benefit change countdown continues

 dla ending pip

Time marches on and the calendar pages turn ever closer towards the date when the UK’s Disabled Living Allowance (DLA) is phased out for working age people1 and replaced with Personal Independence Payment (PIP). DLA recipients who have not yet been invited to apply for PIP are fearful of the day when the phone rings or the dreaded brown envelope drops through the letterbox.

DLA has been the benefit for people who have extra care needs or mobility needs as a result of a disability2 but the message is clear. DLA is ending and that person’s claim will end on a specified date unless a claim is made for PIP. If a claim is made, DLA will continue to be paid until that new application is assessed and decided.

Then they have the stresses of making the claim, possibly being required to attend a face-to-face interview, and finally waiting in trepidation for notification of the decision to arrive – in another brown envelope.

Of course, there are good stories as well as bad. Some people have gone from lower rate care and no mobility on DLA to the enhanced (highest) rate in both care and mobility under PIP. However, for others the opposite has been true with worst case cases going from highest on both sides with DLA to absolutely nothing at all from PIP.

There just seems no rhyme nor reason for the decision-making process.

Official figures3 show that of the nearly 261,500 DLA claimants so far reassessed4 for PIP 74%, or 193,500, have received an award – 67% (128,000) at the enhanced rate and 33% (63,500) at the enhanced rate for both care and mobility components.

And of the 54,200 original decisions that were challenged by claimants, 28% have had their award changed through the mandatory reconsideration process.

But the success of 74% of DLA claimants in gaining PIP awards still leaves a worrying 24%, or 68,000, with nothing.

The roll out of PIP has been beset with problems. The original scheduled implementation date of October 2013 was delayed owing to assessments taking much longer than originally planned. Now, all existing DLA claimants (aged 16 to 64 on 8 April 2013) will have been invited to claim PIP by 30 September 2017, according to the DWP.

 

 

Working age means anyone aged 16 to 64 on April 8, 2013.

Disability means any kind of physical or mental disability, such as Parkinson’s, multiple sclerosis, MND, epilepsy, blindness and many, many more both visible and invisible.

3 Department for Work and Pensions: Personal Independence Payment Official Statistics, published March 16, 2016.

As at January 31, 2016 – the latest figures available, published on March 16.

 

 

No Comments »

Showing we care

world animal day_edited

Not quite sure why but World Animal Day crept up on me; maybe it was the careful stealth of its approach – like a cat stalking its prey.

Anyway, here it is. Today, 4th October, is World Animal Day, chosen because it is the Feast Day of St Francis of Assisi, the patron saint of animals and the environment. Perhaps we should remember, too, that the Pope chose Francis as his name in honour of St Francis.

So, why do we have a world day for animals? In short, to get people involved in getting a better future for animals.

The lives of animals are profoundly affected by the actions of individuals, businesses, and nations.  It’s therefore essential that, as sentient beings, their rightful status as recipients of social justice is established and translated into effective animal protection.

And it is at this point that I feel it is necessary to state my utter distaste for the recent comments made by Princess Michael of Kent when she said that animals do not have “rights” because they cannot pay taxes.

WAD-horse-2_editedSpeaking at a literary festival in the UK, she said: “We’re always hearing about animal rights. Well, I’m a great animal lover, and involved in a lot of conservation, but animals don’t have rights. They don’t have bank accounts, they don’t vote.

“We have an obligation to animals but to say they have rights? You only have rights if you pay your taxes. You earn your rights.”

As a self-professed animal lover who once hand-reared a cheetah, Princess Michael seems to have missed the point. She is saying that as animals cannot do certain human things, they cannot enjoy the same rights as we do. But they surely do have animal rights; they are sentient creatures and they need to be cared for with kindness and fairness as well as being provided with all they need.

World Animal Day organisers say: “Through increased awareness and education, we can help develop a compassionate culture which feeds into legal reform and social progress to make this world a fairer place for all living creatures.  A world where animals are recognised as sentient beings and full regard is always paid to their welfare.

Hopefully, increased awareness linked with better education, for both adults and children, will gradually but steadily WAD-fox-2_editedinfluence attitudes of people towards treating animals in the humane and compassionate way in which they deserve and to which they have a right.

_______________________________________________________

*As writer of this blog, it is necessary to make it clear that I am in favour of the humane treatment of all animals but am not a vegetarian. I have years of experience in agricultural journalism and believe that animal farming for the provision of meat can be carried out with compassion and kind treatment. I am, however, opposed to the killing of any animals for their skins, furs or any other parts. Similarly, I reject the need for the use of animals in laboratory testing of cosmetics or any other product developed for mankind. There may be justification for limited animal use in the field of medicinal research.

2 Comments »

Caring through love not duty

IMG_0334

High above New York City on the viewing gallery of the Empire State Building.

To misquote a well-known Shakespearean saying about greatness: some people are born carers, some people learn to be carers while others have the role of a carer thrust upon them.

In the case of my carer, the last one is most definitely true. Not that my carer thinks that what she does is any more than any loving wife would do but Lisa has to cope with quite a lot – which she does exceedingly well, without complaint, and usually with a smile. And this is despite her having diabetes and a touch of arthritis.

She says she does it out of love not out of duty.

Actually, we both had to laugh when we looked at the requirements for her to claim the UK’s Carer’s Allowance benefit. It says she has to provide at least 35 hours of care a week. Oh, if only it was so little. She provides me with many more hours of care than that. In fact, she rarely goes out leaving me at home alone; and it is almost unheard of for me to be allowed out by myself. And I do mean ‘allowed’ as while, in most cases I have the final say, where my health is concerned Lisa is in charge.

Care covers a whole multitude of things that most able-bodied people take for granted, such as preparing my food, cutting up meat so that I can eat it easily because I cannot hold a knife and fork at the same time, helping me to shower and dress, getting my wheelchair in and out of the car, wheeling me about, and physically supporting me if I try to walk a few yards using my walking stick.

And that does not include extra washing of clothes and/or bedding if I have an accident involving problems with my waterworks. Then there is responsibility for my medication, ensuring we have enough of each one, preparing correct doses and making sure I take the correct tablets at the proper times.

At home, although our new home in Spain is suitable for wheelchair use, I do not yet need to use one indoors. Instead, I get around by supporting myself on furniture and the occasional grab rail. Sometimes I fall and Lisa has learned not to rush to help. If she is in another room, she just calls out to ask me if I am all right. A negative answer or no answer at all would bring her to my side in seconds.

One thing that is remarkable about Lisa is that she married me knowing that I have MS when her only previous experience of the illness was her grandfather and he, it seems, chose to be a sufferer not a fighter.

As my wife and carer, Lisa has to cope with so much, day and night, seven days a week. She has to contend with my occasional outbursts of frustration, my impatience when something won’t go right first time and, sometimes, my determination to do something that I am no longer physically able to achieve – that usually ends in a fall. I often joke that the floor and I are on very good terms as we spend so much time together.

In the ‘CAN do’ attitude to life page on this website, Lisa says I am her hero because “He truly amazes me every day. I don’t think I know a more positive person.” However, in truth, she is really my hero, or heroine if that word is still used today, for all she does both seen and unseen by others.

Lisa is my love, my lady, my life, my very best friend and my carer. She knows that I have a positive outlook on life but she is my strength when I am weak, my support when I am in danger of falling, and, above all, the most wonderful person in my whole life.

 

 

 

1 Comment »