Always interesting, often different

A combination of long term medication is something that many disabled people use to control the pain we deal with each day.

From time to time various scare stories appear in the press and sometimes we find ourselves have conversations or even arguments with a GP who seems determined to stop prescribing medication that works well.

Everyone is different and each of has to find the best way for ourselves.

For several months I decided to use a cannabis spray to try and reduce the amount of Tramadol I was taking. On a bad day I was taking the maximum dose of 2 x 50 mg four times a day. The cannabis spray definitely helped and I began to drop down to 2 x 50mg 2 or 3 times a day.  But the taste was pretty vile and I wanted to look at other options.

I’m part of a Facebook group for wheelchair users, which aims to share hints, tips and ideas for making life a little easier.  One day there was a post about using essential oils for health benefits and I decided to explore. 

What I found out absolutely amazed me. I have used homeopathy and alternative medicine for many years and found it to be very beneficial for things like headaches, cuts and bruises as well as healing after surgery. But using essential oils is another world all together. 

The first thing I found was that there are a myriad of companies out there selling oils. Some are organic, others say little about their origins and their bottles don’t say where the oil comes from. 

I spent ages researching as much information as I could find and learnt a great deal about how oils worked both physically and emotionally. There is a good amount of research and some really interesting studies. What struck me was the way that both Doctors and Nurses were involved in these studies and use oils in their practice. 

There are three main international companies who sell oils. One is based totally in the US with no  UK distribution system, so that ruled them out for me. Another company is mainly in the US, with some distributors in the UK. They grow most of the plants and trees in farms they own in the US, with few from other parts of the world. 

The third company is the newest and is called dōTERRA, meaning gift of the earth. They became my choice for four reasons:

ETHICAL FARMING

doTERRA’s process of sourcing is intended to provide powerful essential oils as well as create an industry that uplifts and instills hope in farming communities around the world. This process is called Co-Impact Sourcing

doTERRA Co-Impact Sourcing helps local artisans in countries such as Haiti, Somalia and Indonesia. They can provide for their families, obtain sustainable jobs, and have hope in their futures.

PUREST OILS

The more pure the essential oil, the more powerful the results. Many essential oils available to purchase are not pure. Often, they contain fillers or other elements that dilute and alter the purity, thus diminishing the healthful qualities of the oil. In order to guarantee that the oils you use are pure, doTERRA and a team of highly skilled professionals formulated a successful testing procedure that qualifies doTERRA oils as uniquely pure and free of contaminants. This quality protocol is called CPTG Certified Pure Therapeutic Grade.®

HEALING HANDS

The doTERRA Healing Hands Foundation™ partners with Operation Underground Railroad (OUR Rescue) to bring healing and hope to the world. OUR Rescue exists to rescue children from sex trafficking by utilizing some of the world’s experts in extraction operations and anti-child trafficking efforts. 

The children rescued from these extraction efforts are then rehabilitated by OUR Rescue’s aftercare program, and the perpetrators are arrested, tried, and convicted to ensure that they don’t traffic children again. 

SUPPORT AND REWARDS

dōTERRA has amazing Wellness Advocates who will help you to explore the oils and find which ones are best for you and your family. There is no sales pressure. 

You can become a wholesale customer, get 25% off all your purchases and then get points to enable you to get oils for free. You don’t need to sell to anyone. For those who want to make money, there is lots of support to help you build a business. 

My next blog post will talk about the oil I found that has enabled me to cut my Tramadol use by 50%.

 

 

4 months late

This blog post was going to be posted in January, but life and politics got in the way and I actually thought I had posted it. It was only when I went to write the post on essential oils that I discovered it was still unpublished.

So here is the missing January blog:

New Year blogs are supposed to be about plans, ideas, looking forward and even making resolutions. 

But what happened just before Xmas 2017 has crept into the New Year and will impact on our lives for some months and maybe years to come.

Part way through December my partner Eve, had a mental health crisis. The worst is now over, and she is doing well. But the outcome could have been very different.

Eve been vulnerable to depression all her adult life. I had noticed that she had been getting increasingly “down” and was sleeping very badly. I presumed most of this was down to a foot injury that had caused Eva a lot of pain. But once her foot was better her mood did not improve. She had a lack of energy, little enthusiasm, no motivation and her sleep pattern got worse.

We received a difficult email to which Eve totally over-reacted, she plunged into what I can only describe as a dark, murky pool.

This is how she described herself:

“I was furious and frantic. I could not eat or sit still. I had to visit my GP premises that afternoon to make an appointment. I realised when I got there that I was in a very bad state and the receptionist arranged for me to speak to a GP then and there. We spoke and she made a regular appointment for me the following Friday.

The weekend was dreadful.  

From this point on I had a constant dry mouth, very poor sleep and appetite. I  saw a friend on the Saturday and again on the Monday morning – I could not speak to Fran, though I wanted to, it was so hard. 

The following Monday afternoon I went back to the GP practice to ask for the antidepressants that had helped me a few years previously. The GP prescribed Prozac 20mg.”

For the rest of that week Eve continued to be profoundly depressed. 

We were able to talk and Eve said more about how she felt. That was good, but Eve was not sleeping and found it increasingly hard to distract herself with reading or listening to the radio.

By Friday when Eve saw her GP she asked for some sleeping tablets. Unfortunately they were useless.

This is Eve’s description of the next two days:

“Friday,  Saturday and Sunday night were pure nightmare.

I woke in the very small hours bombarded by intense negative feelings and associated thoughts. Grief and despair. I tried to block them by reading the ‘easy reading’ books that had been all I could cope with all week and by trying to  listen to the radio. Nothing was effective. 

Friday night almost technicolour, black, red, flashes of bright yellow. Saturday night, dark  browns and purples. Sunday night, paler colours, but the thoughts clearer. Definite suicidal thoughts. I blocked myself from thinking about how I might kill myself.

Later in the morning I’d be tired but relatively calm. In the afternoons the anxiety would build up. I’d pace up and down or sit and twitch. Sunday night I managed to eat two mouthfuls of banana, Monday morning, one bite  banana, one of bread.

During the weekend I’d talked with Fran about how I might need a hospital admission.”

First thing Monday I phoned our GP and she gave Eve an appointment at 10.30am.

It turned out that the only way to get urgent mental health help is via A&E.  The GP gave us a letter, explaining she wanted Eve seen by a Psychiatrist to review and possibly change her medication.  We drove straight to St Thomas’s, and after a 15 minute wait got a car park space, and rushed quickly inside.

A& E were brilliant. Very helpful and caring. We must have seen about five people before we got to the liaison nurse, they found a quiet room for us to sit etc.

The liaison nurse was empathic, helpful, and clearly very expert. 

She referred Eve to the Community Mental Health Team and the Home Treatment. team. She advised against admission. Even the elderly people’s ward is very disturbed – not a good place unless you are really out of contact with reality.

As Eve recalled; 

“My thinking was distorted, rational but not reasonable, but I was not hallucinating or delusional.

Unfortunately it was too late for the teams to see me at the hospital that day,  but they would visit me at home the next day. The hospital also gave me stuff to help me sleep for the next two nights.

I felt reassured and a lot less desperate.  I slept. I ate a little.

Unfortunately after that things fell apart.

The following day, after Fran phoned to chase them, two people from the CMHT (Community Mental Health Team) and HTT (Home Treatment Team) arrived late afternoon. They appeared to be uncaring and unprofessional, were very reluctant to give us their names and we never were told their job titles. 

They asked me if I was actively suicidal – I wasn’t and my partner was protecting me.  I would be ‘reviewed’ by their teams some time that week. Then they might do something. No possibility of a medication review or charge of prescription. Nothing to help me sleep.”

I was so angry. I tried to explain how ill Eve was, but they didn’t want to listen to me, and actually told me not to join in their conversation. 

Luckily Eve had enough savings for another option to be available. I had previously worked at the Priory in Roehampton. One phone call later, we were told we could have a next day appointment and all that was needed was for our GP to email a referral over. 

Within 24 hours we were sitting in the waiting room at Roehampton.

Eve explains what happened next:

The Psychiatrist was good. A careful and sympathetic assessment. I could stay on the same antidepressants, plus a prescription for a small dose of an atypical antidepressant with some sedative action. I was given a second appointment in January when the psychiatrist said he would recommend therapists.

I slept that night. The nightmare rapidly receded. The antidepressants kicked in.

I continued to feel a bit shaky and very tired for a few days.

I’m staying on the antidepressants, and I’ll be looking for a councillor soon.

Without Fran I dread to think what would have happened. If I’d depended on the NHS entail health services, I’d have been in serious trouble.

As it is I’m OK thanks to my partner, friends GP A&E and private psychiatry. 

No thanks to NHS mental health services!

UPDATE

Thankfully Eve is continuing to do well and she is enjoying life again.

Beyond Absurd

Letusin.jpgMy previous post was about the formation of two new campaigning groups within the Labour Party. However it did not give the back story as to why Project 125 and Party Participation and Disabled People were formed. This post explains why.

The “official” Disability group within the Labour Party is called Disability Labour (DL). It has a constitution and is recognised by the NEC, Labour’s governing body. 

The way the group works, however, is bizarre. Whilst there is a committee consisting of a Chair, 2 Vice Chairs, a Secretary and Treasurer the people elected to these posts at the last AGM were not elected by the membership of Disability Labour as a whole. The electorate consisted of a small group of people who could afford to travel to Manchester to a venue that was not fully accessible. They elected members to an Executive Committee. The EC then agreed officer posts within themselves. Hardly democratic. There were requests for the meeting to be streamed to allow others members such as myself to participate. This was refused by the Chair. There were also calls to allow officers to be directly elected by the entire membership. This was also refused, despite it being allowed within the constitution.

Many members, including myself did not receive the calling notice for the AGM until 2 weeks before. This is a breach of the 28 day rule for calling a DIsability Labour AGM. The irony of the AGM being held on 1st April was not lost on us!

There is another absurd issue. All correspondence to members of Disability Labour can only be sent out via Labour HQ. The Officers do not have membership information and are reliant on others to send out mailings. I cannot fathom any reason for this. I’m a membership officer for a ward in my local Party. I receive the full membership list for that ward together with regular updates. Of course, I have to sign a confidentiality and proper use agreement. Why can the same system not operate within Disability Labour?

I cannot ascertain the number of members DL has. There are 97 members in their Facebook group. The majority of this group are vociferous in their dissatisfaction of the way the organisation is currently run.

The committee does not appear to meet at regular intervals. Members of DL are rarely given details of these meetings and in two years I and other members have never had sight of any minutes or decisions taken. There do not appear to be any audited accounts either.

Two of the current officers tell members that they have tried to resolve the issue of the membership list. However when some members have offered to assist with this process they have not received any response from the officers.

A recent thread on the DL Facebook page has asked if members are happy with the way DL is run. Not one person responding to that post is satisfied with the current arrangements.

I am also a member of LGBT Labour. Their membership system is totally different. No data is held by Labour HQ. Members who are eligible to join the group apply directly to the group and membership records are kept securely by the Secretary and Membership Secretary. There is absolutely no reason why the same system cannot apply to DL membership keeping. Nothing in the constitution of DL prohibits membership data being held by DL officers. 

If membership data were to be transferred to DL officers, all that would be required  is to inform members of the change and given them the opportunity to decline to have their personal information transferred. 

There is nothing in the DL constitution that prohibits members from attending an EC meeting as observers. Previously members have not been given any information about when or where the EC is meeting. This week is the first time I’ve seen the date of an EC meeting. One officer broke ranks and chose to disclose it. As yet we do not know where the EC will meet. I have asked for details, I hope I will be given them, but I’m not holding my breath.

All of this bureaucratic nightmare has a major consequence. DL is not able to represent disabled people within the Labour Party. Many of us experience discrimination and side-lining. This is not acceptable. All sections of the party must comply with the Equality Act 2010.

Party Participation and Disabled People and Project 125, have been launched as a direct consequence of DL’s failure to advocate for its members. We wanted to bring these changes through DL, but that doesn’t seem possible at the moment. 

DL should also be supporting the new Labour Shadow Secretary for Disabled People Marsha de Cordova in her role of challenging Tory policies thst cause misery to disabled people.

250 Labour Party members have joined Party Participation and Disabled People and Project 125 has 275 Labour members, both groups more than doubling the DL Facebook group membership. 

The two new groups are buzzing with ideas and have committed volunteers wanting to contribute. The skills we have are welcomed and the collaborative working is a joy to be part of. Websites are under design and campaigning materials are being produced.

The Labour Party seeks to be ‘For the many and not the few’, but within its own ranks disabled people are often marginalised or ignored. Many people with disabilities cannot attend ward or constituency meetings. Venues are inaccessible to wheelchair users, there is no loop system or microphones to enable deaf people to participate. This breaches the Equality Act 2010. As yet, no one has sued their local Party. Some are entitled to, as the EA 2010 applies to any organisation with over 25 members. Thus it applies to the vast majority of Labour Party Constituency Organisations.

The current situation is a disgrace. As a Labour Party member I’m ashamed that DL is so badly run, and that it seems impossible for ordinary members to have any meaningful involvement. Change is needed. Change will happen, either within DL itself or by involvement from MPs and the leadership. 

The question is when and by whom? It can’t come soon enough for me.

Last week the Labour Party had one of its most successful national conferences. Large numbers of delegates came from all over the UK to share ideas and take part in debates. Many fringe events were over subscribed. The World Transformed ran a parallel event. A festival of politics, art, music and culture, it attracted many who were new to politics. All their events were sold out and many had long queues to gain entry. The young labour people I spoke with were enthused to become more involved.

For the first time in a several years there was a separate one day Women’s Conference. I was very fortunate to be delegated by my constituency to attend. I was delighted to have the opportunity to speak to over 2000 women delegates. Speaking of my 8 year wait to find a suitably adapted flat, I told of the difficulties I experienced getting my care package transferred from one London borough to another, less than 5 miles away. I pointed out the failures of the 2014 Care Act and the need for services for disabled people to be fully integrated. But despite all the good things, one practical issue dominated conference. Access for disabled delegates and visitors. There were enablers on hand at the main venues , but they were not always fully trained. 

The Women’s Conference was at the Metropole Hotel on Brighton seafront. The main hall was great once I got inside but the route to get there was tortuous! The access for able bodied people was up a sweeping staircase. The disability access was via a very small lift accommodating a wheelchair & one other person only. Then it was a shlep through back corridors, with narrow corners and fire doors to negotiate. For anyone who could not manage stairs, but could walk with assistance of aids, the walk would have been almost impossible. Whilst there were mobility scooters available to borrow, none would have managed that route. There must have been a level access from another part of the hotel, or from a side road, but no information about this was given to disabled delegates. This may have been for security reasons. But my guess is that arrangements were made without input from someone with a physical disability. 

Often it was minor stuff that was a problem. The ramp into the Metropole ended in a door which opened into the hotel, with a press button opener. Getting out again was impossible without assistance as there was no button on the inside! I was told that the disabled toilets didn’t allow for sufficient space to manoeuvre a wheelchair, a common problem. I will never leave my chair outside a loo unless I have someone guarding it. All of these things reduce one’s independence. 

There were difficulties for delegates who needed passes for their own helpers. If there were last minute changes to personnel, that meant lengthy queues to get passes sorted. My own delegate pass was not cleared when I arrived and even after it had been sorted when I got into Conference I was told that I only had visitor rights! There was a flurry of phone calls to enable me to be called to speak. 

Brighton is not the easiest of places for wheelchair users. Cobbled streets and narrow pavements require careful navigation. But all of the entrances for the Conference venue itself involved passing through safety gates, some of which were both narrow and steep. Others were on the edge of pavements covering dipped curbs, making crossing the road hazardous. Several of the venues for fringe meetings were not accessible at all. One that I attended had no signage and involved a temporary ramp. My helper had to go inside the hotel to find out how I could reach the venue room, then alert me as to where to wait for the ramp. Again, this precludes independence. 

Let us in!

One group of disabled people banded together to give out 5000 leaflets raising issues about access and involvement within local Labour Party organisations. Party Participation and Disabled People have been raising concerns throughout the Party. A letter to the General Secretary elicited a reply quoting legislation (The Disability Discrimination Act) that has been superseded. A lamentable level of ignorance. The group is seeking formal recognition of Disability Officers at all levels of the party with elected officers on the NEC and Conference Arrangement Committees. 

A second group of disabled people lead by Jonathan Fletcher an activist from Ashton Under Lyne, have come together to form Project 125. At least 20% of people in the UK have a disability. The Labour Party has all women short lists for council and parliamentary elections. There are requirements for constituencies and committees to have BAEM (Black and Ethic Minority) places. No such arrangements are in place for disabled candidates. The group is seeking to ensure at least 125 people with disabilities have the opportunity to stand as parliamentary candidates. With 650 seats in parliament, 125 represents the 20% of disabled people. Both groups are getting backing from MPs. The issue of participation will be raised within the upcoming review of democracy within the party, which will be lead by Katy Clarke, who is currently Jeremy Corbyn’s political secretary. 

Disabled people are making sure their voices and viewpoints are heard. There is no excuse for lack of accessibility and a failure to consult. Disabled people must advise on conference planning. I am involved in both groups, we are working together. Our activism and solidarity will enable us to succeed. 

This post first appeared on my Huffington Post blog

A couple of weeks ago I booked to see my GP. I had a very swollen right foot. This had started about 2 weeks beforehand. It was not improving even when I was sitting in bed with my feet elevated.

My leg was slightly swollen, but nowhere near as much as my foot. I also had some discolouration. Thankfully I had no extra pain. 

Having examined me carefully my GP was concerned that I might have a Deep Vein Thrombosis.  My only previous history of DVT was 40yrs ago, when I was on the pill. My GP was also concerned that I may be at risk of Pulmonary Embolism, a clot of blood on my lungs. I had been getting increasingly breathless – though I did not feel it was any worse than when she saw me in April.

But, being as thorough as ever, my GP advised me to go to my local Accident and Emergency Department ASAP. She printed off all my medical notes to take with me. 

So, less than an hour later I was at a large London hospital. I was checked in at the desk immediately and only had to wait 10 more minutes to give all my details to the clerk.  At this point I will admit to feeling slightly scared, I really don’t want or need another medical issue or diagnosis.

90 minutes later I was seen by a highly experienced professional Triage Nurse called Natalie. My BP was raised at 186/92, my pulse was 124 and my oxygen saturation levels were 92. Both of the latter results are fairly usual for me. My severely reduced lung function had at least, not deteriorated.

Natalie quickly did an ECG – electrocardiograph. This did not show any abnormal rhythms. Despite everything being ok, Natalie made the decision to take me round to the major treatment area to be seen by a doctor.

Within 5 minutes I was seen by Dr Elle. She quickly put a cannula in my hand and took bloods from me. The main test I was going to have was a d-dimer which can show if there are high levels of fibrin in blood. This can give a good indication of the likelihood of having a blood clot in my lungs or leg. 

The results would take an hour to come through, so I settled down to read my kindle again.  Dr Elle had explained to me that the hospital protocol varied, depending on my results. If my d-dimer was raised, I would have an immediate CT scan and possibly be admitted. If the results were ok, I would be sent home with a short course of blood thinning medication. I would then return for an ultrasound scan of my leg after the weekend.

Thankfully my results were negative – whew!! I was so relieved!!

I went home, rested and took my medication over the weekend. I returned to the hospital on Monday for my scan. That too was clear.

Within another week the swelling on my foot was greatly reduced. What caused the swelling remains a mystery.

I couldn’t help but be grateful for all the wonderful care I received. Whilst Dr Elle was fairly sure I had nothing seriously wrong, I was treated as though I did. The reassurance of knowing I would have those tests was priceless. Yet it is so often something that we in the UK take for granted. 

We still have a great NHS despite the efforts of this ghastly government and its predecessors attempts to destroy it.

When I hear of those in the US who cannot get good health care or the level of health insurance they need, it makes me even more determined to campaign to keep our NHS free at the point of use.

 

WheelchairVista has been nominated!!

Many thanks to the lovely Lucy Lewis of The Thyroid Damsel who has nominated me

The Liebster Award is an internet based award given to bloggers by other bloggers as a way to promote each other and get discovered online.

This great idea first started in 2011. The blogging community is a wonderful group to be part of. I feel truly honoured that my blog as been recognised and nominated. 

Before I take on the tasks that Lucy has set me, I want to share a little about The Thyroid Damsel. Lucy has Graves disease, this is a condition causing an overactive thyroid gland. It is the most common cause of an overactive thyroid , also called hyperthyroidism. It is named after the Doctor who discovered it. Lucy also battles with auto-immune conditions as well as fibromyalgia. Her blog gives an insight into her story and how she is still able to work part-time.

As part of my nomination, I have to answer some questions that have been given to me by Lucy, these are her questions and my answers:

1) Why did you start your blog? Was it for money or for love? 

I started to blog when I was trapped in a flat that was not adapted for my needs. I could only leave the flat with assistance from a friend or carer, so was going stir crazy! I’ve always enjoyed writing and wanted to use my blog to highlight the difficulties faced by disabled people. 

2) What is your favorite thing to do? 

I love travel, getting on a plane to visit unknown cities and countries is always a wonderful experience. I took my first trip as a wheelchair user last year, going to Gran Canaria. I’m planning a trip to Malta with friends next year.

3) If you could achieve one thing in your life, what would it be and why? 

I would make all transport, shops and buildings fully wheelchair accessible. This would make life so much easier for those of us who have no choice but to use a wheelchair or buggy. It would also enable us wheelie’s to actually do things spontaneously, instead of needing to do days of planning. It would also make life easier for anyone who has mobility difficulties and parents with buggies or pushchairs.

4) If you had unlimited money for a week, what would you do?

I would travel, probably to the US or Canada. I would also use some of the money to help other wheelchair users. So many of us now have to pay for own wheelchairs, and that is often beyond most people’s budget. So I would set up a fund that could help both adults and children. I would also want to set up a project to increase awareness about hidden disabilities and conditions. This would also highlight signs and symptoms that can often be missed in childhood, which if they had been detected earlier, made a huge difference to those people as adults. 

5) What advice would you give to newbie bloggers and vloggers? 

Find something you are passionate about and become an expert in your skills.

For me the best part of being nominated is that I get to nominate 5 other bloggers for this award. Here they are:

Heather 

Powered by Love

Heather has been navigating disability one way or another her entire life and has recently become wheelchair user. She has years of experience working with physical disabilities, autism, mental health issues and rare diseases, including issues around global delays and palliative care. This is how she describes her blog: The whole purpose of ‘Powered by Love’ is to create a space for change to occur. If you’re reading something and you feel like it’s time to take on the challenge of living more fully as the person you were made to be, you don’t have to do it alone.

Cece Alex

The Wallflower in Wonderland

Cece blogs about epilepsy and mental health. Her posts are wonderfully insightful and she is often positive in the most difficult of situations.

Katy 

Katy the Night Owl

Due to severe health problems, Katy is 100% house-bound, and spend some of her time – when not inadvertently sleeping – by crocheting, reading, or chatting to all the many friends she has made all over the world. Katy’s posts often highlight social inequality issues. 

Sue

Spoon Shortage Sue

Sue is a Chronically sick mum, sharing with spoonies everywhere. She has a very rare disease called Adult Onset Still’s Disease. Which means she needs to use a power wheelchair most of the time whilst fighting a fever, flu-like symptoms and severe fatigue, all part of her condition. Sue has also taught psychology, so some her postings have an interesting prospective.

Sarah

A Life Less Physical

Sarah was diagnosed with Fibromyalgia in 2009. As a result of this she decided to look for new hobbies that didn’t require quite so much physical activity. After a while, the hunt for a life less physical became an activity in itself.

So my nominees, all you have to do accept this award is: link back to this page to acknowledge your nomination, answer these 5 questions and nominate 5 others blogs for the Liebster Award

1) What do you like about blogging?

2) What is your favorite book?

3) What is your favorite quote?

4) What is your favorite form of social media?

5) If you were President or Prime Minster for a day which 3 laws would you enact? 

Enjoy!!

 

 

 

Supporting Grenfell too

For the first time in many years I joined a demo a couple of weeks ago. In my pre-wheelchair days I had been a frequent attendee at CND, Anti-Apartheid and other marches. Having seen the overtly aggressive actions from police increase over the years, I was scared to be part of a demo again. Further damage to my spine could leave me paralysed. That was a risk I was not willing to take.

But as I read the postings on Facebook for the anti-DUP demo and saw friends were going I decided to join them. My anger as a gay woman at the lack of LGBT equality, was one reason. However it was my experiences as a Nurse supporting women from Northern Ireland who had come to the UK for termination of pregnancy, that was my deciding factor.

Forcing a woman who had been the victim of rape or incest (or both) to continue with a pregnancy is beyond cruel. Maybe carrying a child to term would be harmful for other reasons. The psychological damage these women carry throughout their lives isolates them. They can never speak of the wounds they bear. These women need support, not condemnation and religious intolerance.

To force them to travel to another part of the UK and then pay for the operation they quite rightly seek, is wrong. Why should where a woman lives determine if she pays for a operation she needs?

So I found my bright red pro-choice t-shirt and set off the join my friends. I even managed to park in the first disabled bay I found at the back of Westminster Abbey. A minor miracle, that bode well for my day.

I soon found the friend I’d arranged to wheel with. Jay introduced me to one of her friends and another woman who was on her own. We soon swapped stories and found common threads in our lives. 

The biggest obstacle I faced all day? No ramps onto the grass at Parliament Square! Why? Are wheelchair users banned from the grass? It may be difficult for us to sit on, but don’t separate us out. Luckily my friends helped me get on to the grass and back to the pavement again. 

The speeches at the beginning were inspiring. I was so pleased that supporters of the Grenfell Tower victims were able to join us. That was making our women’s only march mixed gender, unusual but absolutely right at this time. The march was also trans-inclusive, which was another positive action by the organisers. I’m always pleased when the TEFs (trans exclusionist feminists) don’t get to inflict their displaced irrationalism on other women.

Officially the wheelchair users were to be at the front of the march,  but as we moved up towards Downing Street, I soon found myself cocooned in the center of a mass of women. I felt fully included and safe. On Theresa May’s door step the chanting begun to increase. “No racist, sexist, anti gay, no DUP no way.” “Torys, Torys, Torys, out, out out”, we continued. Then came the chants for Corbyn. Never in all my 40 years of demonstrations have I been amongst a group of protesters who not only wanted the current government out of office, but knew exactly who they wanted as the next PM. 

As I watched Jeremy Corbyn speak at Glastonbury a few hours later, with that enormous crowd supporting and cheering him, I felt the same solidarity that I had been part of in Whitehall. I cannot recall a time I have ever known this strength of positive feeling towards a party leader in the UK.

Slowly, but very surely the political tide is turning. The anger about Grenfell, and the untold stories yet to come. The chaos of the Brexit negotiations and this poison-pact with the DUP will all unravel soon.

Decent, safe homes, a woman’s right to choose, a society that does not discriminate, these are values for all. We will continue to demonstrate until they are achieved. 

This post first appeared on my Huffington Post blog.

 

Jared O’Mara MP

The Speaker of the House of Commons ruled recently that male MPs need not wear a tie when in the Chamber. There has been much fuss made in various newspapers about this. As well as ill-informed comments by MPs themselves. Many correspondents to letters pages seem to regard it as a lowering of standards. 

The House of Commons is a strange and at times, eccentric place of work, with its old traditions and rules. All MPs still have a ribbon attached to their coat hook for hanging a sword on. Less than 20 years ago MPs still had a wear a collapsable top hat if they wanted to raise a point of order. MPs are also never referred to in the Chamber by their own name. My MP, for instance, is the Honourable Member for  Vauxhall. MPs who are members of the Privy Council or have a knighthood are addressed as Right Honourable. 

Such old style forms of address hardly sit well within a 21st century House of Commons. Many new MPs find themselves baffled by the procedures and customs. They do not make for a welcoming work environment. Some have likened it to going to Public School for the first time or even arriving at Hogwarts. 

The Speaker, John Bercow gave no specific reason for his decision about ties other than it was for him as Speaker to decide what was “seemly and proper”. He continued saying that in his view; “a tie was no longer an essential part of business attire”.

But there is another story behind this announcement. That of making a “Reasonable Adjustment” at work for disabled people, as required by the Equality Act 2010. The new Labour MP for Sheffield Hallam, Jared 0’Mara has cerebral palsy and is unable to do up buttons on a shirt or fasten a tie.  He had previously indicated that he may need to ask for such an adjustment. 

John Bercow, like any manager in a workplace has had to make a sensible and pragmatic decision. And not wanting to cause embarrassment to a new MP who has a disability, he made a general announcement. Would it have been better to give a more specific reason? I think not. As disabled people we do not what to be  called out for our differences. But we do need employers to make suitable and reasonable adjustments so we can do our jobs easily and well. 

This is precisely what John Bercow has done. He has also handled his decision with tact and sensitivity. I wish all employers would behave in the same way. 

Many City firms, still require their female staff to wear skirts and high heeled shoes to work. This sexist and outdated attitude should be long gone. It was at the end of the 1960’s that the then Speaker Dr Horace King decreed that women could wear trousers in the House of Commons.

Surely this too, is a change that all employers should be making? Women should have choice in what they wear to work.

The law requires reasonable adjustments for disabled people. I can see no reason to restrict dress codes just to those of us that need them, they should be equally valid for all. 

This post first appeared in my Blog on the Huffington Post UK site, where more of my writing can be found.

The Phone Call

I have been fighting for almost 18 months to get my care package reinstated. According to UK law, if someone moves from one area to another their care package should automatically move with them. This gives people the security of knowing that they will not have to wait for a re-assessment and will continue to get enough care. 

The Care Act 2014 states that the new Local Authority has to continue with a care package for a period of at least 3 months before reviewing. So when I knew I was going to move to my current flat, I made the required phone calls. As I was moving from one Labour run Council to another I expected the process to be simple. How wrong I was.

Whilst my phone calls were logged in my new borough I was told that they they needed three months notice of a move. I was also told that they expected my old borough to pay for my care for the first three months. 

When moving within social housing as I was, it is unusual to get a months notice as I did. Very often a move has to be done within 7-14 days. My old borough, quite rightly, refused to pay for my care once I moved. 

Several very unhelpful phone calls happened. During one, I was told that as I had chosen to move I had no automatic entitlement to care. Explaining that I had moved area after almost 9 years of waiting to get an adapted flat didn’t seem to count. Eventually I was seen by an OT – occupational therapist and a social worker. The OT arranged to get my bathroom adaptations carried out, eventually. Click here and here for the saga.

The SW – social worker demanded lots of letters from all the medical professionals I had seen recently. Then I was told be they wouldn’t accept anything from my current GP as I was still registered with the GP where I used to live. They did not accept evidence from an out of borough GP. I was unable to change GP at that time as I was waiting for spinal surgery and needed continuity of care. 

I did give them permission to contact that GP, which they very reluctantly said they would do. I was horrified to get an email saying my GP informed them I did not need care. When I visited my GP she told me that no such request had been made and no such letter sent. She actually wrote a letter whilst I was with her completely supporting my need for a care package. The letter also stated no previous letter had been sent.

The SW used the “evidence” of the letter she claimed my GP had sent to refuse me care. I asked for a copy of that letter. Of course, I was refused it. I was told I had to ask my GP for a copy. Yes, a copy of a letter that did not exist! How bizarre is that.

Eventually I decided to contact my MP to ask her for help. She was quite horrified at what had happened to me. We made arrangements to meet so I could give her all my documents. Unfortunately shortly afterwards she suffered a family bereavement, so work on my case was delayed. 

Once my MP was back at work she was soon in contact with the Director of Social Services. I now have an email accepting I’m entitled to care. 

But when? How soon? I was contacted in April by another SW. I supplied him with my new GP details and the latest letter I had from my Orthopaedic team. Then heard nothing. 

My MP contacted the Director of Social Services again once she was re-elected. I had another email today – accepting they have done nothing since the April phone call. A response my MP has described as “pathetic!”  Evidently the letter is “too out of date” to be used. I only see that consultant yearly!

I also had a phone call from yet another SW today. It came when I had a neighbour here and I asked the SW to call back at a specified time. Surprisingly she agreed. It is that call which is the headline of this blog.

I was actually shocked that she called back at the agreed time. She seemed professional and wanted to hear what I had to say. But as the call progressed, I became more and more anxious. She constantly cross-questioned why I needed certain treatments. She couldn’t seen to understand that the surgery I had last year won’t enable me to walk around. (It was done to relive a trapped nerve and had had no impact on my back, neck or shoulder pain.) I knew this would be the case and have come to terms with that.

But, every time I’m questioned about why I can’t have this treatment or that operation it puts both my mind and body in a spin. Should I stop accepting how I am? What if there is some miracle surgery that will “cure” me? Have I not seen the right Consultants? I’m left feeling dazed and confused. It has taken me a long time – almost 10 years to get to the acceptance I now have.

I’ve learnt to live with my limitations and mange to enjoy what I can do rather than pining for what will never be possible. What right does anyone have to disrupt my psychological equilibrium? 

My physical reaction from the phone call was all the effects and symptoms of IBS. Several hours later I’m still feeling sick and my stomach continues to gripe. I’m just glad I don’t have to go out tomorrow. 

The next stage of getting assessed depends on the letter I get after I see my spinal consultant on Friday. Officially I shouldn’t even be seen much later this year. But because of my circumstances the surgeon has made an exception and agreed to see me. 

Update to follow……………

 

Heather Morgan

Guest Post from Heather

When I was first drafting my “Ways to Survive Disability” I sent a copy to my friend Heather in Canada. We have in fact never met, but know each other through family connections. Instead of amending what I had written Heather, with her different take on life, came up with these words of wisdom. I am honoured that she has allowed me to share them. 

Heather Morgan lives with her husband and teenage children in Canada, where she writes, coaches and looks for joy in the everyday. She has lived with disability in herself and her children her whole life, and recently joined the ranks of wheelchair users everywhere. Heather now blogs at: poweredbylove

1. Find ways to (re)connect. Friends and family are important to everyone, but when disability strikes it can make it difficult sometimes to connect in the ways you are used to. This in turn can lead to feelings of isolation and increase issues with depression. This can be particularly difficult if your disability affects your energy levels, but finding new and creative ways to connect becomes really important at this point, for you and those who care about you. My husband and I have always enjoyed being outdoors and exercising together, but that’s almost impossible for me now on my own steam. However, he found a charity that offers special running strollers for adults with a disability to use in road races. So in May, he and I will be out racing a 10k race together.

2. Be willing to try old things in new ways. For example, I used to love cooking, and now energy is at a premium, so I don’t get to do much cooking anymore. But I’m discovering how much I still enjoy putting salads together for lunch for the family, even if it’s out of a kit from the store. 

3. Find ways to nurture gratitude. There are a lot of new frustrations available for the newly disabled. If you’re anything like me you may have never noticed just how inaccessible the area you live is before now. Not to mention all the things you never had to think twice about doing that are now challenging or even out of the question. But it turns out that cultivating gratitude in the midst of this space can be really helpful for our mental health. I’m back at it again after a brief lapse, and am trying to look for at least three things a day to be grateful for, which I then write down in a journal before I head to bed.

4. Practice being honest. I don’t just mean about whether you ate the last cookie or invited your partner’s family over next Tuesday. I mean practice being honest about yourself – with yourself and others. Maybe it’s just me, but I’ve never been particularly honest with myself about how my body was feeling. Tired? It didn’t matter, I still had things to do. Sore? That wasn’t going to get the dinner cooked. Hungry? Thirsty? I’ll get to that as soon as I can. But now not only is it important that I’m honest with myself about how I’m feeling and what I need, I also have to learn to be honest with those around me. 

5. You are not your disability. When we first get diagnosed with a disability it can rapidly become all we think about, and all we spend our time on. That’s ok for a time, but before too long you’re going to want to remind yourself of who you are. Although “what you did” may or may not be available for you to do anymore, depending on the nature of your disability, “who you are” – your values, your passions – those will always be with you. Finding ways to be “you” on a daily or weekly basis will go a long way to helping you make the transition to your new way of life.

 

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