My last trip of the year – Completing the circle of change.

Yesterday was my last trip of the year, going back to York to meet up with the DEEP group York Minds and Voices.

Following my diagnosis in March 2017, the negative narrative of the media and society, finishing work and left sat indoors for 6 months watching TV, I had undertaken a trip to York at the end of March which was a lightbulb moment in my life with Dementia.

I had found out about a post diagnosis support course on Twitter called A Good Life with Dementia and has contacted Damian Murphy to see if I could attend.

What followed over those 5 weeks changed me  from a depressed 55 year old who had given up into someone who is an advocate for Dementia and our rights, a member of many organisations, a board member of Dementia Alliance International, attending conferences and events across England and even Brussels.

What it also showed was the importance of post diagnosis support m, especially when it involves peer to peer support, not only for the person with the diagnosis but for the care partner and family as well.

But back to my final trip of 2018.

I wanted to make the journey to say thank you in person to the members of York Minds and Voices for the opportunity to take part in their course earlier in the year.

So, a Taxi took me to the station and my train was the obligatory couple of minutes late leaving.

It was sunny, with some blue sky, but cold with a scattering of frost mainly in the rural areas.

IMG_0362

Once we arrived in York, I took a Taxi to Lidgett Methodist Church to meet up with everyone.

I was greeted by Damian Murphy and Anna and gradually old friends and new began to arrive.

We talked about how the course had had an impact on me and Damian went through some of the business of the day.

Lunch was a marvelous spread organised by Anna and then Damian talked about the groups upcoming involvement in research.

It is so important for people living with Dementia to be at the heart of research, to change the narrative and to encourage research to be written in plain english, not the gargantuan sentences that the lay-person cannot understand.

Then it was time to go home, Damian’s wife arrived with the car and I was dropped off at York Station, getting the obligatory delayed train back to Sheffield and then a taxi home.

So the circle was complete.

On the 27th of March this year I left my armchair, the depression and armchair TV to travel to York for the Good Life with Dementia course

I returned yesterday, living my life within the reducing limits of my Dementia, grateful for the opportunity I was given to undertake the journey I have undertaken over the last 8 and a half months but going into 2019 more determined to do what I can in my own small way to bring about some change.



 

Had a fall -“Alexa Call …”

When I was in Birmingham in August for a Dementia Diaries meet up, there was a lot of discussion about Alexa from Amazon.

When I got home, I decided to give it a try and have been trying it out since.

It takes a while to learn how to use it effectively and to learn new skills as they are referred to and I am still learning.

Apart from things like reminders, which also come up on my phone, so if I am out of the house, my reminder to take my tablets etc comes up on my phone.

One thing stands out which I hadn’t anticipated.

Before going further, it’s only right to state reader that I realise that not everyone with a diagnosis of Dementia has the cognitive ability to use Alexa or learn skills.

So this article may not be applicable to people whose Dementia is more advanced than my own.

That cleared up, so far I found one thing that could be useful for people living with Dementia, that can use Alexa.

I found that I can make telephone calls with Alexa to anyone in my contacts list that has the Alexa App on their phone.

That wasn’t the end of my discovery.

I have Alexa in my living room and I found out by accident that it could hear me in the hall.

My bathroom is downstairs so I tried in there and then the Kitchen and Alexa could hear me in each room.

In a lightbulb moment, I realised that if I was to have a fall downstairs or in the bathroom or kitchen and I couldn’t get to my phone, I could tell Alexa to call someone on my contact list to tell them I need assistance.

Image result for reaching out to a mobile

I now have an Alexa upstairs as well, so the whole house is covered.

Although I don’t live alone, my wife still works full time, so I can be home alone at times.

If I did live alone it would be reassuring for me to have such enabling technology.


This is just my experiences of using Alexa for which I haven’t received any payment or inducement by Amazon.

Sunday Musings – 16 December 2018

The last couple of weeks seem a blur.

On Thursday evening after travelling to London, Brussels and Manchester over 10 days, I could no longer concentrate on anything, coordination was lacking and I found myself off to bed around 7pm mentally and physically exhausted.

As many of us have said before, there is a price to pay for all we do and for me the recovery is taking longer.

However, what we do isn’t just for us, it is for those that do not have a voice.

To take Dementia from the dark ages where it was and still is seen as a silent disease.

To challenge old school rhetoric and to show that Dementia has a beginning, a middle and an end.

That depending on when you are diagnosed, that you may be able to live within the limits of your own diagnosis.

That it may not be the end of the beginning, but the beginning of the end.


Videos

Peter Berry’s 76th Weekly Video

Stephen Tamblin’s 31st Weekly Facebook Video is here

You can also catch Stephen’s 6th video on YouTube


 

Blog

“By putting people with dementia at the center of person-centeredness we are saying that the lens through which we see them, talk about them, support them, etc. reflects how THEY see the world, what is important to THEM, what THEY need. This is where we start. This puts us, as people supporting people with dementia, at the center, WITH them.”

Sonya Barsness’s blog titled I Love You for What You ALMOST Are, Person-Centeredness.



 

Behaviour Change Ahead? Re-Labelling the Dementia Doubters Actions

Today’s behaviour change considers re-labelling the actions of the Dementia Doubters.

You know reader, the ones that question our diagnosis and our ability to publicly speak and write, creating a hostile environment that augments our fractured emotional state following our diagnosis.

Take a look at George Rook’s Blog Munchausen by Dementia

As with Dementia, people with other disabilities are subjected to negative treatment because of the negative perceptions of disabilities.

The way the media portrays people with disabilities, spills over into society.

They show images via a narrow definition of the later stages of a disease, which leaves the impression that upon diagnosis, at the flick of a switch, you are at the final stage of that particular disease.

Depending on the comments and the effects it has on the person’s wellbeing or professionals reputation, it could be described, jointly or severally as Discrimination, Abuse, Prejudice, Defamation, Libel, Slander, Disability Hate Incident or in extreme cases a Disability Hate Crime.

So let’s have a look at some of the labels that could be applied to the actions of Dementia Doubters.


Discrimination and Abuse

People living with Dementia at an earlier stage are often told

“You don’t look like you have Dementia” or “That happens to me”

These comments are unfairly discriminating against a person with Dementia ie they are an unfavourable comparison based upon the perceptions of the media and society not upon facts.

Some professionals cannot see how a person with Dementia can help set up services for Dementia.

Some Professionals question our diagnosis and thereby question the ability of the medical professionals who gave us that diagnosis.

In Domain 4 of the GMC code:

59 You must not unfairly discriminate against patients or colleagues by allowing your personal views to affect your professional relationships or the treatment you provide or arrange. You should challenge colleagues if their behaviour does not comply with this guidance, and follow the guidance in paragraph if the behaviour amounts to abuse or denial of a patient’s or colleague’s rights.”

Earlier this year in Crewe

Driver verbally abuses disabled woman for parking in a disabled space

A mother said she was abused for using a blue badge to park, because her two-year-old daughter, who has a medical condition, does not look disabled.

Mum ‘abused’ over daughter’s blue badge

There are quiet aisles in Supermarkets, yet people have been subjected to abusive and discriminatory comments.

Even in schools disabled people are poorly treated

Autistic boy ‘constructively excluded’ from school

 

In Boston, they are campaigning for a register of those who abuse the disabled

Prejudice

This is a preconceived opinion that is not based on reason or actual experience.
An example would be judging a person with Dementia’s experiences of their disease without living with Dementia yourself.
Even a person living with Dementia could not be able to judge another’s experiences as all our experiences are unique.

Defamation, Slander and Libel

Questioning a person’s diagnosis could harm their reputation or that of the professionals making their diagnosis.

It can cause emotional and mental harm, leading to anxiety, depression and disengagement.

Defamation is the publication to a third party of a statement about you which has caused or is likely to cause serious harm to your reputation. The defamatory publication will either be a libel or a slander.

Libel relates to a defamatory publication which is permanent. Most obviously this includes written material (books, newspaper and magazine articles or material published online), as well as allegations appearing on TV or radio.

Libel covers all written words, wherever they are published, although the operators of websites are given certain protections if they were not responsible for publishing what has been posted on their website.

Slander relates to more transient publications, principally spoken words or even physical gestures.

Can I bring a libel complaint over defamatory publications on social media such as Twitter or Facebook?

Even relatively transient publications such as Tweets can constitute libel provided they have caused or are likely to cause serious harm to reputation and name a specific person.


What is a disability hate incident?

Something is a disability hate incident if the victim or anyone else thinks it was carried out because of hostility or prejudice against disabled people.

This means that if you believe something is a hate incident, it should be recorded as such by the person you are reporting it to.

When a disability hate incident becomes a criminal offence, it’s known as a disability hate crime.

May be it becomes a criminal offence if someone committed suicide for example after a professionals public questioning of their diagnosis or the hostile environment of benefit assessments.

“Hate crimes against disabled people like me are dismissed. But they exist and they’re terrifying”

writes Actor and disability campaigner Samantha Renke


Maybe reader, it is time to call a spade a spade as my Grandfather used to say.

If their comments were made in relation to race, colour, religion, sexual orientation etc, there would be an almighty outcry.

My diagnosis involved 8 professionals including a Professor and included MMSE, Mini-Cog, Addenbrookes, Neurological Examination, Blood Tests, MRI, SPECT Scan, 4.5 hours Neuropsychological testing followed by 3 hours a year later to confirm diagnosis and another MRI at the start of a study.

When the Dementia Doubters question mine and other peoples diagnosis, they are also questioning the professional competency of the 8 professionals involved in my diagnosis, along with million’s of other people’s diagnosis’ and the millions of professional competencies involved in their diagnosis.


Professionals may be experts in the mechanics of Dementia, but the people living with a Dementia diagnosis are the experts by experience.

We may not look and act like we have Dementia, nor do we chose to have a diagnosis of Dementia.

However, we are the experts when it comes to recognising changes in our abilities in the earlier stages and we are the experts, experiencing the cognitive changes that beset us on an almost daily basis.

No one chooses to have a diagnosis of Dementia.

No one chooses to be abused and stigmatised by the media, society and the Dementia Doubters.


A line is slowly being drawn in the sand to challenge the hostile environment

of the Dementia Doubters and the negative narrative of the media and society


Although the lyrics aren’t wholly relevant, to quote the title of a Tom Robinson Band track 40 years ago:

“We ain’t gonna take it no more”



Coming Up in 2019

Here are a few things coming up in 2019:

This is not an exhaustive list and subject to change but provides information on a few of the events coming up next year that are being advertised.


Alzheimer’s Society

ASAC19

Alzheimer’s Society 2019 Conference


The Alzheimer’s Show

AlzShow19

Details Here


DemAdv

Dementia Adventure

Holidays for a Person Living with Dementia plus a Care Partners can be found here


Dementia Care Matters

dcm

A Call for Expressions of Interest to be the next new phase of Butterfly Homes in the UK

January 2019 – Beyond Dementia Care – All Care Matters

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Dementia Carers Count

dcc

Here are our three-day residential course dates for early 2019, for family carers of people with dementia.

 

Please get in touch with their team by email support@dementiacarers.org.uk or call them on 0790 909 0987 to find out more and to book.

28 – 30 January 2019 The Eaton Hotel, 279 Hagley Road, Birmingham B16 9NB Core Course: Dementia Carer Support, Birmingham Free.

 

15 – 17 February 2019 Chiseldon House Hotel, New Road, Swindon Wiltshire SN4 0NE Me, You, Dementia Too: Carer and Person with Dementia No places left.
26 – 28 February 2019 The Eaton Hotel, 279 Hagley Road, Birmingham B16 9NB Core Course: Dementia Carer Support Free.

 

05 – 7 March 2019 The Eaton Hotel, 279 Hagley Road, Birmingham B16 9NB Core Course: Dementia Carer Support Free.

 

22 – 24 March 2019 Chiseldon House Hotel, New Road, Swindon Wiltshire SN4 0NE Young Onset Dementia Carer Support Course, Swindon Free.

 

15 – 17 April 2019 The Eaton Hotel, 279 Hagley Road, Birmingham B16 9NB Core Course: Dementia Carer Support, Birmingham Free.

 

More Info


Alzheimers Europe

AlzEuro

Alzheimer Europe have a list of other conferences here



 

DisAbility – People with Reduced Mobility – Travel Rights Regulations

Dementia is recognised as a cognitive disability by the United Nations and through The United Nations Convention on the Rights of Persons with Disabilities (CRPD).People living with Dementia and Cognitive Disabilities are legally entitled to assisted travel including assistance from the point of arrival at their departure airport till they leave their destination airport.

It is not something that could be provided or that is done as a favour, it is our right.

Sadly, the recent experiences of people I know in Manchester and Brussels turned assisted travel into perceived assisted rights abuses.


ReducedMobility.eu states on it’s website:

Travel Rights Regulations

 

People with reduced mobility (PRM) travel rights vary considerably depending which airline one chooses, and which is the final destination of the flight.

While all IATA (International Air Transport Association) member airlines should comply with IATA resolution 700, (Acceptance and Carriage of Incapacited Passengers) European and Non European Air Carriers are subject to different regulations depending on the final destination of the flight.

The duties and rights of people with reduced mobility can be found in two separate regulations: U.S. Department of Transportation 14 CFR Part 382 (Nondiscrimination on the Basis of Disability in Air Travel) and EU Regulation 1107/2006 concerning the rights of disabled persons and persons with reduced mobility when travelling by air.

Air Carriers Compliance

DoT 14 CFR Part 382 applies to all air carriers, U.S. or foreign, whose flights originate or terminate at a U.S. airport irrespectively of the point of origin of the flight.

EU Regulation 1107/2006 applies to all European air carriers whose flights depart from and arrive at a European airport. The law also applies to European Air Carriers departing to or arriving from airports located outside the European Union.

Non European air carriers “should” comply to EU Regulation 1107/2006 for all flights departing from a European airport. However, this is rarely the case.

Non European and Non U.S. air carriers operating outside territories falling under the scope of DoT 14 CFR Part 382 and EU Regulation 1107/2006 may be subject to regulations individual to the country in which the air carrier originates from.

Substantial differences between DoT 14 CFR Part 382 and EU Regulation 1107/2006

DoT 14 CFR Part 382 identifies the air carrier as sole responsible for providing accessibility services to people with reduced mobility. From the moment PRM enter the airport terminal to their assistance on board the aircraft and vice versa, the air carrier is sole responsible of all assistance services.

EU Regulation 1107/2006 divides responsibilities and duties between airport managing bodies and air carriers. Air carriers’ assistance requirements are limited to assistance on board the aircraft. Assistance within the airport terminal building is upon the airport managing body. Because of this separation of roles, it is far from uncommon for PRM to experience disservice while boarding or deplaning the aircraft due to communication issues between air carriers and airport managing bodies.

Examples

DoT 14 CFR Part 382.

The regulation applies to all flights from or to the United States of America, irrespectively of the nationality of the air carrier.

Kuwait Airways flies a nonstop service from London Heathrow to New York JFK. Even though originating from Kuwait City, the leg London – New York falls under the scope of DoT 14 CFR Part 382.

EU Regulation 1107/2006

It is unclear, because not clearly specified within the Regulation, if connecting flights under the same flight number constitute a single flight.

British Airways flies from Sydney to London via Singapore. Unless otherwise specified, portion of flight under which the regulation 1107/2006 applies is Singapore – London.(*)

(*) Note: we are setting a lobbying process in motion to achieve full clarification of this issue.

Emirates Airlines flies from Dubai to London – EU Regulation 1107/2006 does not apply to this flight.

PRM Duties

In order to protect your rights or the rights of the person with reduced mobility traveling, one must give the air carrier notification of the individual’s specific needs no less than 48 hours before the published time of departure of the flight.

This can be done by contacting your travel agent or the air carrier directly. Some airlines allow passengers the ability to request assistance via their web sites’ electronic features when booking online.

Depending on the extent of required assistance airlines identify passengers with reduced mobility with the following codes:

WCHR. The passenger can ascend/descend steps and make own way to from cabin seat but requires wheelchair for distance to/from aircraft, i.e. across ramp, gate or to mobile lounge as appropriate.

WCHS. Passenger cannot ascend/descend steps, but can make own way to from cabin seat; requires wheelchair for distance to from aircraft or mobile lounge and must be carried up down steps.

WCHC. Passenger totally immobile; requires wheelchair to/from aircraft/mobile lounge and must be carried up/down steps and to from cabin seat.

Air carriers may require medical clearance by their medical office in the following cases:

a) Passenger suffers from any disease which can be contagious and infectious;

b) Passenger may develop abnormal behavior or physical condition because of his or her underlying condition, which could have an adverse effect on welfare and comfort of other passengers and or the flight crew;

c) Passenger would require medical attention and or medical equipment to maintain their health during the flight;

d) Passenger might have their medical condition aggravated during or because of the flight.

Passengers have the duty and responsibility to comply with medical clearance request. Failure to comply may result in denied boarding.

However, people with reduced mobility who only require assistance at the airport, or in embarking or disembarking the aircraft shall not be subjected to medical clearance. It is unlawful for an air carrier to seek medical clearance from PRM requesting the above assistance.

PRM Rights

These rights apply to all European domestic flights, All U.S. domestic flights, flights from and to the United States of America irrespective of the nationality of the air carrier, flights from the European Union to all other destinations and vice versa operated by European air carriers.

Please note: when traveling with a non U.S. or European air carrier to destinations other than the EU or the USA your rights come under the protection (or not) by the national law of carrier’s country of origin.

At the airport terminal:

* Assistance to move from a designated arrival point within the airport terminal to the check-in counter;

* Assistance with personal and baggage check-in process;

* Assistance to move from the check-in counter to the aircraft, with completion of emigration, customs and security screening.

* Assistance to board the aircraft with the provision of lifts, wheelchairs or other assistance needed, as appropriate.

On board the aircraft:

* Assistance to move from the aircraft door to your seat, help to store and retrieve baggage to and from the overhead locker.

* Assistance in moving from your seat to the toilet.

* Assistance to move from your seats to the aircraft door.

When leaving the aircraft:

* Assistance to disembark from the aircraft, with the provision of lifts, wheelchairs or other assistance needed, as appropriate.

* Assistance to go from the aircraft to the baggage hall and retrieve baggage, with completion of immigration and customs procedures.

* Assistance to move from the baggage hall to a designated arrival area within the airport terminal building.

Inside the airport terminal, when taking an onward connection:

* Assistance to reach connecting flights when in transit, with assistance on the air and land sides and within and between terminals as needed.

In addition to the above, PRMs shall receive the following services:

* To be assisted by an accompanying person who can provide the necessary assistance in the airport and with embarking and disembarking.

* Ground handling of all necessary mobility equipment, including equipment such as electric wheelchairs subject to notification of at least 48 hours prior to the time of departure of the flight.

* Transport free of charge of up to two pieces of mobility equipment per disabled person or person with reduced mobility, including electric wheelchairs, subject to notification of at least 48 hours prior to the time of departure of the flight.

* Carriage free of charge of recognised assistance dogs in the cabin, subject to national regulations.

*To be seated next to your accompanying carer whenever possible (mandatory if PRM is a minor).

* To the temporary replacement of damaged or lost mobility equipment.

Please note: people with reduced mobility or travel disability must receive the above assistance. It is unlawful of an EU or U.S based air carrier (or any other air carrier flying from and to the United States of America) or airport managing company or their third party service providers to deny the above assistance in part or as a whole.

What happens when things go wrong

More often than not, people with reduced mobility are subject to discrimination and embarrassment when traveling by air. Because of intersecting and overlapping legislations there is no single model to complain about an alleged infringement of laws protecting the rights of PRM. The section “PRM Rights: How to Complain” provides information and advice on the subject.

Notes and References:

The content of this page is for information and guidance only. The content of this page shall not be treated, seen or considered as legal advice. If you need legal advice, please contact a solicitor.

EU Regulation 1107/2006 (opens a new window)

U.S. Department of Transportation 14 CFR Part 382 (opens a new window)

IATA Resolution 700 (opens a new window)

DisAbility – Assisted Air Travel – Brussels Airport

Dementia is recognised as a cognitive disability by the United Nations and through The United Nations Convention on the Rights of Persons with Disabilities (CRPD).

People living with Dementia and Cognitive Disabilities are legally entitled to assisted travel including assistance from the point of arrival at their departure airport till they leave their destination airport.

It is not something that could be provided or that is done as a favour, it is our right.

Sadly, the recent experiences of people I know in Manchester and Brussels turned assisted travel into perceived assisted rights abuses.


Brussels Airport states on it’s website:

At Brussels Airport, we aim to help our passengers with reduced mobility (PRM) in the best way possible, tailored to their needs.

If you have special (medical) needs or some difficulty to move around, we will be very happy support you free of charge, with a special assistance service to make your journey as comfortable as possible. In order to provide you with the best possible assistance, we encourage you to advise us ahead of your trip and to arrive well in advance at the airport

Travelling with a wheelchair, a battery powered mobility aid or any other medical equipment? Always contact us in advance, even if you don’t require our assistance.

Although it is not compulsory, we encourage you to inform us on the nature of your medical problem (pacemaker, reduced mobility,…). In all cases where assistance is required, we will take the passenger to and from the aircraft and offer assistance with catching connecting flights.

Special assistance: practical info

The PRM service at the airport is provided in conformity with Regulation (EC) No 1107/2006 of the Parliament and of the Council of 5 July 2006 concerning the rights of disabled persons and persons with reduced mobility when travelling by air.

Passengers with reduced mobility who travel alone may apply for special assistance to help them move about the airport. In this case, assistance provider Axxicom Airport Caddy will see to it that you’re brought to the gate in a wheelchair.

Don’t forget to request this service at least 48 hours in advance of your scheduled departure time through your airline or travel agent.

>> Airline contact details

After checking in your luggage, you can go to the Special Assistance reception desk for further assistance. You can find the desk in the departures hall, near check-in row 1 next to Travelex.

Security and wheelchairs

The general security rules also apply to PRM passengers. At the Special Assistance reception desk, you can prepare for the security check at your own pace. An assistant will guide you through the screening process and take you straight to the gate or to a waiting room, depending on the timing.

Our team as well as the cabin crew can help you board the plane. Please let them know what you prefer.

Also inform your travel agent or airline in advance if you bring and use your own collapsible or powered wheelchair. Please ask them about special arrangements or any rules that may apply. This is also important for the airport of destination.

Passengers with reduced mobility who travel accompanied can borrow a wheelchair from the Special Assistance desk. You may leave the wheelchair at the gate.

Help points with intercom

If you are in need of special assistance but can’t get to the Special Assistance desk in the departures hall yourself, there are several PRM Help Points with intercom at the airport. You can find them in the following locations:

  • Parkings: parking P3 Holiday, level 2 (departures)
  • Drop-off zone: next to the ticket machine, near the 4 parking spaces for the disabled
  • Busstation: at platform C
  • Train: near the elevators

But it would help if you were told this beforehand, which isn’t the case.

Parking spaces for the disabled

If you travel to the airport in your own car, you can leave it in one of the car parks while you’re away. Every car park has dedicated parking spaces marked with the customary disabled parking only sign.

These spaces are located as closely as possible to the exits of the car parks. Don’t forget to display your official disabled parking permit!

Assistance dogs and guide dogs for the blind

As a general rule, dogs are not allowed in the airport terminal building. For assistance dogs we gladly make an exception: they are welcome to Brussels Airport.

If you want to know if your dog is allowed in the cabin of a particular flight, please check with your travel agent or airline beforehand.

Passengers with a mental impairment (Alzheimer’s disease, syndrome of Down,…)

In order to make sure that mentally impaired guests will enjoy a comfortable journey, it is very important to evaluate their ability to cope with unfamiliar situations such as finding their way to the gates or communicating with staff and understanding safety instructions during the flight.

Please be aware that the way to the boarding gates at international airports is often long and can be complicated. Mentally impaired passengers may have difficulty finding their way around and communicating with staff. Security, Customs and Police checkpoints may cause stress and anxiety.

Certain impairments that lead to confusion or disorientation (such as Alzheimer’s disease) may result in the passenger not paying attention to the crew’s safety instructions. It can also lead to unforeseen circumstances such as the passenger disembarking without supervision or getting lost at the airport. We kindly ask you to consider carefully if the person concerned will be able to travel alone or if they need a travel companion.

Contact information Medical Assistance Co-ordination Service

Email: meda@brusselsairlines.com
Phone: + 32 2 723 8014
Fax: +32 2 723 3705

Opening hours:
Monday till Friday: from 9h00 – 12h30 and 13h30 – 16h00
Saturday, Sunday and bank holidays: from 9h00 – 13h00



 

DisAbility – Assisted Air Travel – Manchester Airport

Dementia is recognised as a cognitive disability by the United Nations and through The United Nations Convention on the Rights of Persons with Disabilities (CRPD).

People living with Dementia and Cognitive Disabilities are legally entitled to assisted travel including assistance from the point of arrival at their departure airport till they leave their destination airport.

It is not something that could be provided or that is done as a favour, it is our right.

Sadly, the recent experiences of people I know in Manchester and Brussels turned assisted travel into perceived assisted rights abuses.

This article from 13 Jul 2018 seems to reinforce the poor assistance experienced.


Manchester Airport states on it’s website:

Hidden Disabilities at Manchester Airport

We are working on ways to identify how we can improve the airport experience for our vulnerable passengers who may not want to share details of their hidden disabilities or use our assistance service.

If this applies to you or someone you’re travelling with, we can offer you a special lanyard to wear on your journey through our airport. This will identify you to staff as someone who may need additional support or understanding. Our staff have been specially trained to recognise the lanyards and act accordingly. Please note this lanyard permits access to our family and priority lanes at security as well as the use of our special assistance lanes at the UK Border on arrival in to Manchester Airport.

To pick up a lanyard at Manchester, please go to one of our Assistance Reception areas. These are available within our Check-in halls in Terminal 1 A and B, Terminal 2 and Terminal 3. We will be happy to give you a lanyard, even if you haven’t requested or need special assistance.

Assistance at the airport

If you’ve booked assistance with your airline, please visit the Assistance Reception Desk, which is in the check-in hall in each terminal. Alternatively if you need assistance from your vehicle or public transport there are assistance call points in these locations and a member of the team will be happy to come and assist you.

Once you’ve registered at the Reception Desk you’ll be given the option to be assisted to the check-in desks or make your own way there if you prefer. Following this, our team can assist you through security and into the departure lounge where there is a central reception desk where you can wait for your flight or arrange to meet the assistance team for boarding. Once it’s time for boarding, the assistance team will ascertain your needs and assist you to board the aircraft in the most suitable way for you.

AccessIble and Manchester Airport have worked in collaboration to create a detailed guide to assist you in getting around the airport.

Please select the individual areas of interest here.

Security

Our Aviation Security Officers have all received Disability Awareness training ensuring they are aware of sensitivities regarding disabilities. We have private search areas available in all Security Search Areas. Where required, our Aviation Security Officers will provide walking aids to assist passengers through the Archway Metal Detector (AMD). Seating is also available close to the AMD in the search area.

Should you need to take liquid medication in your hand luggage, this will be screened using specific equipment. Please declare any medication to our Aviation Security Officers at the baggage x-ray load area when placing your items into the trays provided.


Maybe the Manchester Airport Access Forum needs to do some mystery shopper visits to the airport, although there is no way to contact them via the website that I could find.

Manchester Airport Access Forum

Andy Wright – Chair

Andy Wright, has 30+ years in the tourism and leisure industry – 20 of which have been spent managing the needs and requirements of disabled holidaymakers travelling worldwide, through his company Accessible Travel and Leisure. He is a wheelchair user and a Disability Advocate for a number of UK airports, where he provides practical guidance and advice, to support and enhance their disabled passengers` seamless end to end journey experience, as well as chairing a number of airport consultative committees, which are designed to build future partnerships and collaborations with local charities and disability organisations.

Sue Clarke – Alzheimer’s Society

With a background of 30 years’ experience working in Health and Social Care, Sue has spent the last decade at the forefront of driving the dementia agenda across Greater Manchester. A keen advocate for improving public and patient experience within communities and health and social care environments, she has played an instrumental part in improving the lives of people living with dementia. Sue’s role as Operations Manager at Alzheimer’s Society over the last 9 years has involved influencing commissioning decisions and working with local government to raise awareness of the growing numbers, poor diagnosis rates and increasing financial burden of dementia.

Libby Herbert – Colostomy UK

Libby Herbert works for Colostomy UK, a national charity that offers free support and advice to people with a stoma (known as Ostomates) their families, carers and friends. The charity also runs projects to empower ostomates to return to sports, hobbies and other interests and give them the confidence to take up fresh challenges, as well as advocating for ostomates’ rights and their voice on the bigger issues. Their campaigns raise awareness and encourage organisations to make their facilities more inclusive. Libby joined the Accessibility Forum at Manchester Airport to help shape, influence and give guidance in the area of hidden disabilities, to make travel accessible for all.

Jude Sutton – JDRF

Jude Sutton is Regional Fundraiser Northwest for JDRF – a Type 1 diabetes research charity which works to find a cure, and make life easier for people living with the condition. Jude become involved with fundraising for JDRF when her twins were diagnosed with Type 1, and later joined the charity permanently. Jude hopes that by joining the forum, she can help make airport travel as easy as possible for people who travel with insulin pumps, medication, continuous glucose monitors, and every other variation of diabetes kit.

John O’Doherty – Alzheimer’s Society

John O’Doherty was diagnosed with Vascular Dementia in 2016. He works closely with the Alzheimers Society, in particular with United Against Dementia and the 3 Nations Dementia Working Group, which work towards influencing policy on both a local and national level. As part of the Accessibility Forum, John advises the airport on the difficulties that people living with dementia face throughout the passenger journey and makes recommendations for areas of improvement.

Emma Roberts – The National Autistic Society

Emma Roberts is a Project Officer at The National Autistic Society. In this role Emma develops and delivers training for professionals, delivers seminars for families and provides information and signposting for autistic adults, families and professionals. She is also part of a team developing the Greater Manchester Autism Strategy. Emma joined the forum to work collaboratively with Manchester Airport staff towards reducing the barriers to travel for autistic people.

David Lodder – Manchester Multiple Sclerosis Society

David Lodder is Committee member for Stockport and South East Manchester Multiple Sclerosis Society. David was diagnosed with MS in 1996 and now uses a wheelchair, and, as an avid traveller, has found travel more difficult since his diagnosis. He wishes to improve the journey experience for those with both visible and invisible disabilities.

Phil Bennett – MND Association

Phil Bennett first became involved with the Association in 1995 when his mother was diagnosed with Motor Neurone Disease. Phil found the Association a huge help during this difficult time and joined the committee in 2001, later becoming Chair in 2003. The Association’s mission is to improve care and support for people living with MND, their families and carers. They fund and promote research that leads to new understanding and treatment’s and brings us closer to a cure from MND. The Association provides as much information and support to help people living with MND to carry on their travels.

Melanie Worthington - Motor Neurone Disease Association

Melanie Worthington – Motor Neurone Disease Association

Melanie Worthington is Regional Care Development Adviser for Motor Neurone Disease Association. In her role, Melanie works across Greater Manchester, seeking to improve services and support provided to people with and affected by Motor Neurone Disease. Her work involves developing links with health and social care professionals as well as raising awareness and providing education to ensure people develop knowledge of MND, its impact and the support people require to ensure their needs are met in a timely way. This can also include ensuring that people are fully supported when they make a decision to travel.

Kieran McMahon – Disability Stockport

Since 2003, Kieran McMahon has been CEO at Disability Stockport, a local charity which supports disabled people and their families. His current role involves partnership work, especially around access and equality issues, and he supports individuals across a range of needs. Kieran is an assessor for The Civic Trust Awards and has been a member of the Manchester Airport Accessibility Forum for many years.

Carrie-Ann Lightley – AccessAble

Carrie-Ann is Marketing Manager at AccessAble, the UK’s leading provider of accessibility information. She’s a wheelchair user who loves to travel, a provider of information to disabled people and a well-respected figure within the tourism industry. This gives Carrie-Ann a unique insight into all areas and aspects of accessible tourism and travel. Carrie-Ann is an award winning blogger, travel writer & campaigner, passionate about equal access for all. She contributes to the form using her experiences as a disabled passenger, and her knowledge of the accessible travel industry which she was worked in for 13+ years.



 

DisAbility – Assisted Air Travel – Civil Aviation Authority

Dementia is recognised as a cognitive disability by the United Nations and through The United Nations Convention on the Rights of Persons with Disabilities (CRPD).

People living with Dementia and Cognitive Disabilities are legally entitled to assisted travel including assistance from the point of arrival at their departure airport till they leave their destination airport.

It is not something that could be provided or that is done as a favour, it is our right.

Sadly, the recent experiences of people I know in Manchester and Brussels turned assisted travel into perceived assisted rights abuses.


The Civil Aviation Authority states on it’s website:

Your rights in the EU

If you’re a passenger with a disability or reduced mobility you are legally entitled to support, commonly known as ‘Special Assistance’, when travelling by air.

This means airports and airlines must provide help and assistance, which is free of charge, and helps ensure you have a less stressful journey.

Special assistance is available to passengers who may need help to travel such as the elderly, those people with a physical disability, such as wheelchair users, and those who have difficulty with social interaction and communication, such as those with autism or dementia.

Your right to special assistance is stipulated in EU law and applies when:

  • You fly on any airline from an EU airport
  • You fly on an EU registered airline to an EU airport

Passengers who want special assistance should aim to give their airline 48 hours notice of the help they require.

Help is available from the moment you arrive at an airport and can cover:

  • your journey through your departure airport
  • boarding the aircraft and during the flight
  • disembarking the aircraft
  • transferring between flights
    and
  • travelling through your destination airport.

Details of special assistance services provided by all airlines and UK airports

Outside the EU

Similar passenger rights apply in other countries including the United States. However, there are many parts of the world where similar rights are not available. Assistance may require a fee or not be available at all.

The CAA’s role

We want to make sure everyone has fair access to air travel. We work with industry to make this happen by promoting special assistance and improving the consistency of the service available.

We also understand things can go wrong and we ask anyone who has a complaint relating to special assistance to call the CAA Passenger Advice and Complaints Team on 0330 022 1916.

We respond to and review all complaints received and can use our enforcement powers if any patterns relating to non-compliance emerge.

When should I ask?

You should ask for assistance either when you book or at least 48 hours before travel, whether it is through a travel agent, tour operator or airline. This information will then be passed to the airport and the service provider.

If you don’t give advance notice you could experience delays and may not receive the service that you need.

How can I request help?

It is up to you to find out how to request help. Airlines, travel agents and tour operators should provide a free method of requesting assistance when you book (or at later stage). You may be asked about about special assistance during the booking process but this isn’t standard practice so you may need to make a request.

If you are booking on a website, look out for a special assistance link for information on how to get the type of help that you need.

Your travel service provider may ask you to telephone them or their agent or complete a web form. Many airlines provide a Freephone or local rate number for you to call to notify them of your assistance needs. Some airlines also offer a free call-back option.

What can I ask for?

It is important that you are clear about the type of help that you need. This will help avoid delays and ensure that you receive appropriate support. Many airports also provide additional information tailored specifically to people with hidden disabilities.

This could include:

  • transfer from a designated point, such as car part or bus stop, to the terminal building
  • the use of an airport wheelchair to get to the gate
  • extra help getting through security searches
  • assistance with boarding the aircraft and getting seated
  • specific seats on the aircraft

Airlines will need to know:

  • you are taking an electric mobility aid (e.g. an electric wheelchair or mobility scooter)
  • your condition means that you need extra care and attention

Questions that you may wish to consider in advance include:

  • Are on-board wheelchairs available on all aircraft? These are used to move people to the toilet during the flight.
  • What are the walking distances to departure gates? Airports should provide this information on their websites.
  • Does the airport uses air bridges or steps for passengers to board aircraft?
  • The number and type of accessible toilets at the airport and on board aircraft.
  • What restrictions (e.g. safety, weight, space, battery type) apply to the carriage of electric mobility aids.
  • The airline’s policies on carriage of oxygen.
  • The airline’s policies in relation to compensating for damaged mobility equipment.
  • The types of seats available and how the airline allocates these.
  • Restrictions on medication at security searches (especially relating to liquids).
  • When should I check in?

    Airlines usually specify times for checking in and getting to the departure gate. They may recommend a slightly longer time frame for passengers with disabilities and reduced mobility, so be sure to confirm this in advance of your flight.

    Assistance points

    When you arrive at the airport you should go to as assistance point. This can be inside or outside of the terminal.

    Assistance points will usually have some type of disability related logo, and include a buzzer or telephone to enable you to call for assistance should they not be staffed at that time.

    Airports must locate assistance points at various places in the airport boundary and this may include drop off points, car parks, train stations and bus terminals. If you park at a medium/long term car park you will usually need to make your own way to the terminal using the airport’s bus service. In the UK these vehicles are generally accessible, in terms of having a ramp, so that people in wheelchairs can board.

    If you need extra help at in the airport, including during security searches, airport special assistance desks can provide identification (lanyards, badges etc.) to people with hidden disabilities. These are optional.

Staff at assistance points can help with:

  • taking you to a designated “special assistance” area in the terminal building
  • getting to check-in and bag drop (if required)
  • going through security, into the departure lounge and to the departure gate

Alternatively a companion can escort you, including pushing you in an airport provided wheelchair, through the airport and up to the departure gate. If you have your own wheelchair or electric mobility aid you should be able to use your own equipment right up to the departure gate.

Many airports have a designated area in the departure lounge where you can wait until your flight is called.

Boarding

Special assistance staff can help you travel through the departure gate and on to the aircraft. They will also help you get to your seat and with stowing your carry on bags if required.

To assist with this process, different equipment may be used. These include ambi-lifts (also referred to as high lifts), ramps, and small “transfer” wheelchairs which are used on the aircraft.

At your destination airport

On arrival, your wheelchair or mobility aid should be returned to you at the arrival gate, unless there are extenuating reasons.

You may be entitled to assistance through immigration, customs, baggage reclaim, and all the way to the designated arrival point, depending on the country visited. This may include some car parks, train stations, drop off points.

Resolving travel problems

If you experience any problems with your assistance which are not satisfactorily resolved at the time, we recommend asking if you can take the name of your attendant, and then raise the matter with the airline / airport.

Safety information

Airlines are responsible for communicating essential information about a flight in accessible formats.

If you require a personal or an alternative type of safety briefing it is important that you notify the airline in advance so that this can be arranged.

Airlines may make use of audio and visual materials such as safety cards and signs to communicate i.e. illumination of the seatbelt sign for landing and cabin crew checking the cabin.

Access to toilets

Airlines are also obliged to provide assistance to and from the toilet and most will have onboard wheelchairs on each of their aircraft.

It is important to discuss your onboard needs with the airline before you travel so that they can tell you about the facilities that are available and how their staff can help you.

You may also need to ask the airline to be seated as close to the toilet as possible.

How to make a Complaint

First, you should take your complaint directly to the airline or airport.

If you have already done this and are dissatisfied with the response they have provided, you can refer your complaint:

For a visual representation of this process, see our process diagram.

Both ADR bodies and PACT will advise you on whether they think you have a valid complaint, and if so will take it up with the business concerned. However, PACT cannot impose a decision on an airline while CAA-approved ADR bodies can.

Before contacting either, you will need to have written to the company concerned first, and provide either the ADR body or PACT with all the relevant information. Make sure you read these webpages carefully to avoid unnecessary delays in resolving your complaint.

Claims agencies

The CAA recommends that consumers seeking to make a complaint should complain directly to the airline or airport concerned. Although consumers are entitled to use third parties, including claims agencies, to assist them with their complaint, such agencies typically charge consumers a fee for this service which can often be a significant proportion of the compensation amount being sought.

The European Commission has published an Information Note for passengers making claims under Regulation 261/2004 to protect them and help them to make informed choices if they are considering using a claims agency. The key points made by the Commission are that:

  • Consumers should always seek to contact the airline first
  • Claim agencies must clearly display the price of their services, i.e. showing an initial price on their website which includes all applicable fees
  • Claim agencies must be able to produce a clear power of attorney signed by the consumer
  • Claim agencies should not resort to persistent unsolicited telemarketing
  • Personal data should not be transmitted to claims agencies without permission from the consumer and must be appropriately protected


 

Sunday Musings – 09 December 2018

This Week

Tuesday saw the first meeting of Dementia Enquirers in London. It is organised by Innovations in Dementia and DEEP UK with funding from the Big Lottery Fund.

Dementia Enquirers is a group of people living with Dementia along with Philly Hare and Rachael Litherland looking at how research can be undertaken by the 100+ DEEP groups.

Wednesday to Friday saw the European Commission-Hague Convention Joint Conference on the Cross-border Protection of Vulnerable Adults in Brussels which I attended along with Kate Swaffer and Julie Hayden.

In a cruel twist of fate, Kate had a poor experience of Assisted Travel at Brussels Airport and Julie had a poor experience at Brussels and Manchester, the only way it could be described is as Assisted Rights Abuse.

More to follow in the coming week.

Apologies reader, as it’s only a short article today as I am recovering from my travels this week.


What’s On

Tuesday 11th December, Sheffield Age UK Dementia Group Sessions


Videos

Peter Berry’s 75th Weekly Video

There are no videos from Stephen Tamblin this week as he is in Hospital, hopefully he will be better soon.


Blog

Shelagh Robinson’s blog Cheese on Toast – or not coping