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News and Opinions about MS, Health & Disability

MS Brothers Able to Remain at Home Thanks to Caregiving Support

 Continuing to live in your own home when you can no longer look after yourself is an ideal many people seek to aspire to – but it’s not easy. Outside help is often needed.

Alex Camarillo is one perfect example of this. He is 35 years old, has severe multiple sclerosis, and lives at home in South Bend, Indiana, where he is cared for by his brother Danny, who is in his late 30s.

The brothers could not live in the way that they do without the benefit of the support they receive from a dedicated care team from Caregiver Homes.

Danny told me: “I was put in contact with Caregiver Homes through Real Services. I think this is a very valuable company with a lot of resources.  It is extremely helpful to someone as myself, who does not have any medical experience.

“The services I have used the most have been the resources the company has helped set me up with.  For example, getting Alex set up with a therapist to see, and also just the support they offer Alex when they come to our home.  They are always a listening ear for him, which is very helpful.”

I asked how long Alex had been diagnosed. Danny’s reply was heartbreaking: “Alex has been diagnosed with MS since 2012.  I myself have been diagnosed since beginning of 2015.”

Yes, both brothers have MS.

Fascinated with the services provided by Caregiver Homes, I spoke with Dr. Jay Patel, the clinical transformation officer of its parent company, Seniorlink.

Care at home achievable with right support

“Caregiver Homes is a caregiving-focused organization that provides training and support to Medicaid recipients — support to allow them to stay in their own homes,” Dr. Patel said.

Dr. Jay Patel.
Dr. Jay Patel.

“Every client has a care manager and nurse who identify needs, create a care plan to achieve goals, overcome obstacles and make regular visits. They also work with hospital discharges, medications and so on.”

He continued: “Over time, regular family caregivers can become stressed. In these cases, we can provide an alternative caregiver who can step in to give the regular one a break. We can also find an adult day care facility in some communities. We find the most appropriate places and can provide help with transport if needed.”

The company currently has 3,500 families as active clients across six states, but demand for its services is growing. “We will not only be expanding in those states but, in the next few years will be launching in three others,” he said.

I was keen to know how his company’s services are funded. Dr Patel said: “Caregiver Homes is not a charity; we are a ‘for profit’ organization, but all the services we provide to a client are paid for by Medicaid. We only work for Medicaid recipients.

So, how do the Camarillo brothers rate the support they receive?

“Caregiver Homes has helped me in numerous ways in caring for Alex,” Danny said. “They are always very supportive and there if I have any questions or concerns. It is also very nice that they come and do in-home meetings, because sometimes it is hard to get Alex out of the house.

“At the same time, they are very respectful of our time and privacy and never come without arranging something beforehand. This company has allowed me to properly care for my brother and give him sense of independence rather than having nurses/home health aides come in and care for him.”

This article,written by me, first appeared in Multiple Sclerosis News Today.

 

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Ian FranksIan Franks is Managing Editor of the Columns division of BioNews Services, owner of 5o disease-specific news and information websites, including Multiple Sclerosis News Today. He has enjoyed a successful career as a journalist, from reporter to editor, in the print media; during which 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 and uses his skills to write his own flourishing specialist MS, Health & Disability blog at www.50shadesofsun.com. 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.

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Just another question, or 15, to a blogger with MS

Here’s my second half of answers to the 30 question quiz  started the other day.

Why and when did you start blogging? 50shadesofsun went live on August 1, 2015. The reason why is that my years of writing experience as a journalist were going to waste. I was too young to retire, and still am – just, but had been forced to stop working by mobility problems caused by multiple sclerosis.

Advice on your area of expertise Having a disability, the best advice I can give is to keep active and, by that, I don’t necessarily mean physically active (no need to rush to the gym). Activity can be mental, doing things that exercise your brain.

List 5 blogs you read on a regular basis, and why Hm, a difficult one this, as I read so many and by naming some, it is so easy to offend writers of others. I’ll just say that I like to read other MS blogs, lifestyle ones and any others that grab my interest.

What do you collect? Absolutely nothing, anything printed that I used to keep is now scanned and on computer, anything in the form of an object is generally discarded. We don’t even have bookcases these days, that’s what e-books are for! Of course, there are things I’d like to collect – like money – and things I’d rather not have – such as aches and pains.

What’s your greatest fear? Nothing, really. There are things that I don’t like but that’s not fear. I don’t even fear what MS may have in store for me. Life is there for living in hope, not in fear. I don’t worry either; if there is a problem that I can fix, I do so but if it is beyond my control, why worry? I must admit that I don’t like heights but heights don’t kill you, nor does falling from them; landing, though is a different matter!

Provide 5 easy steps to anything Just what is an ‘easy step’? I really have no idea! I either try to walk a few yards, actually a better description would be stagger, or use a wheelchair.

 What do you do to save money? I did the most important thing five years ago – got divorced from my first wife who used to spend what we didn’t have. Lisa is the opposite, she hates using credit and prefers to only spend money when we have it.  Second thing was to move to Spain where the cost of living is much lower than in the UK, where we used to live

Describe your most embarrassing moment Embarrassment doesn’t tend to affect me. If I make some sort of ‘faux pas’, I just laugh it off and blame MS for it. Otherwise, my attitude is ‘love me or loathe me, here I am’.

Describe your city Our village, not a city, is about 1.5 km from our home. It is typical of small villages in Spanish agricultural areas, slow and sleepy except at fiesta time when it explodes into life. Our nearest town is 10 km away and is also on the small side, as towns go, but it has the facilities you need. It’s where we go to the supermarket, bank and doctor. The oldest part of town is made up of narrow streets with properties dating back well before the invention of the internal combustion engine.

 What’s your favourite restaurant? Back in the UK it was, without a doubt, Paanshee Bangladeshi in Prestatyn, North Wales. Here in Spain we have so many great restaurants that we have not yet got just one favourite.

What’s your guilty pleasure show? I suppose my regular ‘fix’ of Grand Prix motor racing is my biggest TV pleasure but I don’t feel guilty about it.

What’s your favorite season? We live in an area in which there is sun all year with very little rain. The fields where crops are grown rely on irrigation, not rain. So, as you might imagine, we both love the sun – whatever the season.

Talk about your idea of a perfect date One with my wife, the love of my life. Nothing else matters as long as Lisa is there.

How do you normally spend your weekend? If you have ever seen the TV series Downton Abbey you’ be familiar with aristocratic family. One day at dinner, a new in-law mentioned doing something at the weekend to which the matriarch asked “What is a weekend?” When you don`t go out to work there is little difference between weekdays and the weekend. Now that I write and do other things for MS News Today, weekends are a bit different again but not much.

Explain what you liked most about this challenge It was fun to do and gave my brain a little workout, which takes me back to the second question and answer.

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Benefit assessor lied, say doctor and nurse

Assessors working on behalf of the UK government, to evaluate claims for Personal Independence Payment (PIP) continue to be the cause of endless complaints for their unacceptable behaviour. PIP is the welfare benefit paid to people with multiple sclerosis and other disabilities, and the behaviour of some assessors is well below the professional standards we have a right to expect.

disability-news-serviceA benefits assessor working for the outsourcing company Capita repeatedly “lied” in her report, after carrying out a face-to-face assessment of a disabled nurse which was observed by her husband, a retired GP – according to an article posted on the Disability News Service website.

The disabled woman and her husband have asked not to be named – so their claims have not been put to Capita or the Department for Work and Pensions – but they have provided proof to Disability News Service (DNS) that they are both on their respective professional registers.

They believe the behaviour of the Capita assessor, herself a registered nurse, makes her unfit to remain in her profession.

Although DNS has received a string of credible reports from disabled people who say their benefits assessors lied in reports written after face-to-face medical assessments, this account is particularly credible because the behaviour was witnessed by both a nurse and a doctor.

The woman, Mrs A, lodged a complaint with Capita even before she knew the result of the test because she and her husband were so appalled that last month’s assessment at their home in south Wales was so rushed, impersonal and poorly carried out, and ignored key questions.

Mrs A, who has significant support needs due to a series of medical conditions, had already had to fight to have her disability living allowance (DLA) restored after it was stopped by DWP when her PIP claim form was lost in the post, while “rude and confrontational” staff then refused to provide her with a replacement form.

The couple say the assessor made almost no eye contact during the PIP assessment, but spent most of the time typing on her laptop, while she continually interrupted Mrs A as she tried to explain the impact of her impairments on her daily life.

Worst fears confirmed

Mrs A said that when she and her husband saw the report the assessor had written, their “worst fears were confirmed”.

As a result of the report, Mrs A’s previous entitlement to the higher rates of both the mobility and care components of DLA were downgraded under PIP to the standard daily living rate and no entitlement at all to the mobility element.

She has now put in a second written complaint, this time about the content of the report and what they say are the assessor’s lies.

Both Mrs A and Dr A say they have a duty as healthcare professionals to expose the assessor’s actions.

Among their many concerns is that the report stated that there was no evidence that Mrs A was wearing hearing aids, when the briefest of checks would have shown they were in place behind her ears.

The report failed to mention her painfully swollen leg, and said that Mrs A refused to stand, when in fact the assessor had recognised she was in too much pain to stand and so did not ask her to do so.

Among many other concerns, the report failed to point out that Mrs A was clearly “distressed, in pain and anxious”, and failed to note the forgetfulness and slowness of thought she showed during the assessment.

Dr A said the report was “an absolute fabrication”.

He said: “The actual examination was laughable. It took a few moments.

“My wife couldn’t even stand up… yet somehow she was able to infer that she could walk more than 50 metres but less than 200.

“How do you infer that from someone who wasn’t even able to get up out of the chair?

“She said she couldn’t see the hearing aids. She didn’t even look to see if the hearing aids were in place. How difficult is it to move a couple of hairs?”

He added: “It was appalling. Every single sentence in that report can be torn apart.”

Mrs A, who is not able to do clinical nursing work because of her impairment, said she believed the assessor “had an agenda”.

She said: “I feel hurt that a nurse, who is also a colleague in a way, would behave in this manner.

“Nurses are supposed to act with integrity in all that we do. We know how important recording of information – truthfully – is.”

She added: “We feel the nurse is acting dishonestly.

“I cannot understand how if you are a nurse you wouldn’t act impartially. I don’t understand how you can be both a nurse and a PIP assessor.

“The public rely on the integrity, honesty and openness of nurses. As a nurse myself, this kind of behaviour has to stop.”

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Progressive MS gets grants boost

Three new grants totaling £3.6 million are to be made by the International Progressive MS Alliance to researchers in an attempt to speed up the pace of research into progressive MS. This is good to see as research into finding treatment for this type of MS is often said to have lagged behind.

The Alliance is a international collaboration of MS organisations around the world and these Collaborative Network Awards are each three-year grants.

The projects receiving the funding are:

  • Identifying a biomarker of disability progression for use in clinical trials

This network is led by Douglas Arnold from McGill University in Canada and includes researchers from the Institute of Neurology at University College London. The team is pioneering the development of magnetic resonance imaging (MRI) markers that signal disease progression, and adapting these for use in early clinical trials of progressive MS treatments.

  • Bioinformatics and cell reprogramming to develop an in vitro platform to discover new drugs for progressive multiple sclerosis (also known as BRAVEinMS)

This project is led by Gianvito Martino from San Raffaele Hospital in Milan, Italy. The BRAVEinMS team is working to identify molecules that may have a role in protecting nerve cells or the capacity to promote myelin repair.

  • Development of a drug discovery pipeline for progressive MS

Francisco Quintana from Brigham and Women’s Hospital in the US is leading a network spanning America, Austria, Canada and Israel. Their goal is to identify drug candidates that may be effective therapies for progressive MS and that will be ready for evaluation in patients within four years.

Bringing great hope

Caroline Sincock has progressive MS and is on the Alliance’s Scientific Steering Committee. She said: “As someone who lives with progressive multiple sclerosis, it brings me great hope to see such international efforts to work together to answer questions about one of the least understood forms of MS.”

 

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Random fact: I live with MS but refuse to suffer from it

I found this 30 day challenge online but thought that would take too long so decided to complete it in two parts. This is part one, the second will follow soon. It’s just a bit of fun.

Five random facts about yourself Let me see: 1. I started my first ever job after leaving school in 1970. I was a trainee reporter for a local newspaper in London. 2. I love politics. 3. I spent years working voluntarily in the Scout movement, rising from Assistant Scout Leader to District Commissioner. 4. I have two passions, my wife and writing. 5. I live with multiple sclerosis but refuse to ‘suffer’ from it.

Favourite quotes Don’t wait until tomorrow, tomorrow never comes (Anon). True that, because to everyone it is always today, we cannot live in tomorrow.

What makes you happy My wife’s love, that’s all I need.

Earliest childhood memory Even I find this difficult to believe but I can remember being wheeled in my pram and it being parked by a parade of shops. I was left outside in the pram while mum went into a shop. Life was different in 1953.

Favourite movies you never get tired of watching Not a movie buff, never have been and certainly not a person to watch the same film over and over again.

Your last random act of kindness Nothing special, but I let a person with just a handful of items go in front of me at the supermarket checkout. Does that count?

What is your dream job? Being a journalist, done that.

Biggest pet peeve Badly behaved children; no blame on them, though, it’s the parents who are at fault.

What’s on your bucket list?  Don’t have a list of things to do before I ‘kick the bucket’. But, having MS, I am determined to do all I can, while I can.

Rate the last movie you watched As I have already said, I am not a movie buff.

The last book you read All of Dan Brown’s novels including The Da Vinci Code and Angels and Demons.

What is your favourite recipe?  Just so many to eat, so little time.

What’s on your favourite playlist? Lady by Kenny Rogers, Goodbye Again by John Denver, The Keeper of the Stars by Tracy Byrd, Coat of Many Colors by Dolly Parton, and These Are My Mountains by Daniel O’Donnell. Anyone spot a theme here?

Tips on travelling to a destination Only one: Travel safely, make sure you arrive.

What are your 10 must haves for a vacation? Wife, comfy bed, peace and quiet, good food, pleasant weather, fun, places to visit, medications, all our luggage (nothing lost by airline), and sea or ocean views.

 

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All health records need to be protected

Not everyone is happy to tell the world about their health problems, especially if they cannot be seen. This is one of the reasons why people newly diagnosed with multiple sclerosis, or some other invisible disease, sometimes choose not to reveal their illness.

And that is their right, their choice. While my disability is obvious, I’m resolute in my defence of anyone who is able to hide theirs. It is no-one else’s business.

health-recordsThat’s why I am disgusted by people hacking and then revealing the medical records of athletes. They may claim that such actions are in the public interest; that the public has a right to know.

No, it isn’t; no it’s not. We don’t need to know about any athlete’s personal medical records. What’s next? Our medical records too? Our health records need greater protection.

Another form of hacking was used by the now closed News of the World newspaper in the UK a few years ago. Then it was mobile/cellular phones that were the targets as the reporters worked illegally to gather private information.

Arrests, trials and even some jail sentences followed, not to mention some sizable compensation payments.

Hacking of private medical records is unconscionable and should be pursued by the full force of the law of any country where the hackers are found to be.

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Euthanasia for terminally ill – where do you stand?

Euthanasia is a difficult and contentious subject to deal with as there are strong opinions on both sides of the argument but it is a crucial issue for many with one of a number of chronic illnesses.

There are those who campaign for the right to die with dignity while others talk about the value of life.

Debbie Purdy (Pic: Zambio).

Debbie Purdy (Pic: Zambio).

Debbie Purdy, who had primary progressive multiple sclerosis, became well-known in the UK for her right to die campaign. She even won a court ruling to clarify the law on assisted suicide. She died in December 2014, aged 51.

Former comedy actor Brian Rix became president of Mencap learning disability charity and opposed euthanasia for many years. As Lord Rix, in the UK parliament’s upper house, the House of Lords, he voted against changing the law. However, he later changed his mind when he became terminally ill.

Shortly before he died last month, 92-year-old Rix said the law on assisted dying needed changing and wrote to urge the Lord Speaker1, who presides over the House of Lords, to push through legislation allowing those in his situation to be assisted to die.

He said his illness has left him “like a beached whale” and in constant discomfort.

In his letter, Rix wrote: “My position has changed. As a dying man, who has been dying now for several weeks, I am only too conscious that the laws of this country make it impossible for people like me to be helped on their way, even though the family is supportive of this position and everything that needs to be done has been dealt with.

Lord Rix (Pic: Mirror),

Lord Rix (Pic: Mirror).

“Unhappily, my body seems to be constructed in such a way that it keeps me alive in great discomfort when all I want is to be allowed to slip into a sleep, peacefully, legally and without any threat to the medical or nursing profession.

“I am sure there are many others like me who having finished with life wish their life to finish.

“Only with a legal euthanasia Bill on the statute books will the many people who find themselves in the same situation as me be able to slip away peacefully in their sleep instead of dreading the night.”

I find that letter touching but it is only one side of the argument. There is a worldwide network of groups campaigning against euthanasia and, for the moment, they seem to have the upper hand in most countries.

What may concern many, though, is that news has just broken that a terminally ill minor has been helped to die in Belgium for the first time since the country did away with age restrictions on euthanasia two years ago.

Liberal Senator Jean-Jacques De Gucht who wrote the law, said the minor was from the country’s Flemish region, but refused to provide any other details in order to protect the privacy of the grieving family.

Since the change in its law, Belgium is the only country that allows minors of any age to have assistance in dying. In the Netherlands, the lower age limit for euthanasia is 12 years.

In Belgium there are strict rules for euthanasia to be approved. The minor has to be in the final stages of a terminal illness, to understand the difference between life and death rationally and to have asked to end his or her life on repeated occasions. It also needs parental consent as well as approval of two doctors, one of which must be a psychiatrist.

Human euthanasia is legal in the Netherlands, Belgium, Colombia, and Luxembourg. Assisted suicide is legal in Switzerland, Germany, Japan, Canada, and in the US states of Washington, Oregon, Vermont, Montana, and California.

Do so many places represent a breakthrough or the thin end of the wedge? Is it good or bad? For me this is a question of health and personal conscience. It should not be a subject for moral or religious debate.

Each individual decision should be a private matter, not one for public debate or protests.

¹ Baroness D’Souza, who received Lord Rix’s letter, was succeeded as Lord Speaker by Lord Fowler on September 1.

 

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Urgent action urged to correct social care shortages

Chronic under-funding of the UK’s social care system, revealed by a new report from by The King’s Fund and Nuffield Trust, has prompted the Multiple Sclerosis Society to call on the government to take action.

On its website, under the heading ‘New report shows human cost of a social care system struggling to cope’, the society says:

The care and support people receive depends on where they live and how much money they have rather than their needs, according to the report ‘Social care for older people: Home truths’.

The report looks at the impact of funding cuts to local authorities’ budgets for social care services. It finds the social care system is unable to meet the needs of people who depend on it, and that cuts are placing an unacceptable burden on unpaid carers.

Key findings of the report:

  • Six consecutive years of cuts to local authority budgets have seen 26% fewer people get help.
  • More and more people are having to pay for their own care. Those who can’t afford to pay are relying on an increasingly threadbare local authority safety net.
  • The situation for people needing care has been made worse by pressures elsewhere in the NHS.
  • The funding outlook for the next five years is bleak – the growing gap between needs and resources will reach at least £2.8 billion by 2019.

Real Lives

The Richmond Group of Charities, of which we are a member, has published a complementary report, ‘Real Lives’, which gives voice to the experiences of people using social care.

It features the story of Alison, a woman in her seventies who lives with MS and has received a social care package from her local authority for the past 12 years. Her story highlights the difference it makes to have meaningful choice and control over her care.

Denied support

michelle mitchell ms societyOur chief executive, Michelle Mitchell (pictured, right), said: “The evidence and experiences in this report echo many of the stories we hear from people with MS and their families and carers – that social care is chronically underfunded and not working for the people who rely on it.

“MS affects nearly 90,000 people in England and more than a third of them could need social care support. Shrinking social care budgets are leaving too many people without the help they need to live independent lives. It’s also increasing pressure on families and carers who play an invaluable role in supporting people with MS.

“The Government must urgently address the shortages in the social care system so that people with MS aren’t denied the vital support they need and unnecessary pressures aren’t put on the NHS.”

 

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Two Paralympic golds, two world records, one silver medal and one bronze in four starts – and she has MS

A Paralympic athlete who now also competes as a cyclist and has multiple sclerosis, has gained a medal in each of the four events in which she took part.

Kadeena Cox, 25, won two golds, each with a world record time, one silver and one bronze. She was due to have taken part in a fifth event yesterday but an injury forced her to withdraw without starting.

Nevertheless, the medals she has won means she is the first Paralympic competitor to win medals in two different sports since 1988. Even more special is the fact that she won her first gold medal as a cyclist and her second as a track athlete.

Just a handful of years ago, Kadeena was a promising able-bodied sprinter competing in the athletics’ test event for London 2012 Olympics but in 2014 she suffered a stroke before being diagnosed with MS.

The young athlete set her mind on chasing Paralympic gold in Rio – which she has achieved in style.

She admitted: “Without my sport I would have crumbled. I was driven to succeed and it made me battle through the tough times.”

Kadeena Cox wins Paralympic gold in a world record time. (Pic: Sporting Life).

Kadeena Cox wins Paralympic gold in a world record time. (Pic: Sporting Life).

Despite the diagnosis, Kadeena was able to continue running, but with slower times, and in addition she took up track cycling as it aided her recovery.

“I got straight back into running, I just couldn’t deal with how slow I was going. But then taking on the cycling helped that a lot,” she said.

A member of the British team, Kadeena took athletic bronze in the T38 100m last Friday (October 9), her first gold in Rio was achieved the next day when she won the track cycling C4-5 time-trial. Her second gold was back on the athletic track on Wednesday in the T38 400m then, on Thursday, she won team silver in the T35-38 4x100m relay.

Yesterday, she was due to get back on the bike for the C4-5 road race but, disappointingly, had to pull out before the start with a hamstring problem.

Still as the Rio Paralympic Games comes to an end, Kadeena Cox will return home to Leeds as a double Paralympic champion in two different sports, and a double world record holder, also in two different sports. Added to that, she has both a silver and bronze medal to her name.

And, remember, she has done all this despite having multiple sclerosis which, as we who have that disease know full well, can cause fatigue and is likely to worsen over time.

Well done, Kadeena, all of us who live with MS are proud of you. In fact, all of us with any disability are proud of you.

BREAKING NEWS

Connected to, but separate from, this story is the sad news that an Iranian cyclist has died after a crash during a road race at the Paralympics in Rio. Bahman Golbarnezhad was treated at the scene and then suffered cardiac arrest as he was taken to hospital and later passed away.

The crash took place on a mountainous stretch as he was going down a steep hill during the men’s C4-C5 race for athletes with lower limb impairments or amputations. It was the women’s version of this race that Kadeena Cox was prevented from starting by a hamstring injury.

 

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Zero tolerance for misuse of disability parking permits

A borough council has successfully prosecuted seven people on the same day in a crackdown on fraudulent misuse of Blue Badges that act as special car parking permits throughout Europe for people with disabilities.

Disabled_parking_placeThe incidents all took place between March 21 and 27 June 27 this year.

This latest prosecution comes as Bromley Borough Council, in London, UK, says it will continues its zero tolerance on misuse in order to protect the Blue Badge Scheme. As a Blue Badge holder, because I have multiple sclerosis, it is extremely pleasing to see the council is taking such positive action against those who misuse the scheme.

All those accused pleaded guilty and were ordered to pay fines, costs and victims surcharges adding up to £2350.

bluebadgefrontBromley council launched its Blue Badge misuse campaign last October last year, and is aiming to promote the correct use of the badge while fighting fraud and misuse. A Blue Badge should only be displayed if the badge holder is travelling in the vehicle as a driver or passenger, or to pick the badge holder up, or drop them off.

It is very important to remember that running an errand without the badge holder is considered misuse and is criminal offence which can lead to a £1,000 fine as well as confiscation of the badge.  So far, the council has successfully prosecuted 17 badge misusers since the start of the crackdown.

Bromley Council is planning to send a friendly reminder of the rules to all scheme users and its officers are happy to answer any questions badge holders may have.

 

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