Social Services Archives - inclusivelivingconcepts

Are migraines a disability?

08/10/2022

Are migraines a disability? In my experience yes!

inclusivelivingconcepts was abandoned because, at the end of April, I started having horrific migraines which meant that until recently I haven’t been able to do anything but curl up and pray for the pain to stop. Very dramatic, but unfortunately true as many of the disability community will agree. Whether it is classed as a disability or not officially is down to how affected you are. In my case, pain like that is temporary. I couldn’t do anything sometimes as I couldn’t see from my left eye.

Are migraines disabling?

Professor Peter Goadsby at Kings College London and the trustee of the migraine trust describes a migraine as,

“an inherited tendency to have headaches with sensory disturbance. It’s an instability in the way the brain deals with incoming sensory information, and that instability can become influenced by physiological changes like sleep, exercise and hunger.”

Taking this definition, the answer to the question, are migraines a disability is also a resounding yes as it is described as an instability in the brain.

An individual cannot help the fact that they are prone to migraines, but if specific triggers are realised, they may be avoided. An example is watching too much TV or reading without glasses if needed. Some people do not have triggers but a big one for me is stress and overexertion.

Substandard Care causes massive stress!

My posts have complained about the care system since I started this blog. People who actually care and who want to do the job are few and far between. Why do people apply for jobs and then just disappear without saying anything? I’ve had it with interviews too, people say they’ll turn up and then don’t.

I don’t understand why people don’t do what they say they will. I’m starting to wonder if I will find a team of people that I’m comfortable with but am trying to stay positive and not take it personally. This stress causes my muscles to tense up even more than usual. This is the double whammy of my Cerebral Palsy increasing the chance that I will experience a debilitating migraine.

Are migraines a disability that qualifies a person for benefits?

Yes, if your migraines are likely to last over twelve months and they prevent you from working. It all depends on how a migraine affects an individual and whether treatments are effective.

Medication for migraines

The medical profession’s attitude towards medication, in general, has shocked me! I don’t like taking more medication than I need but I couldn’t stand the agony of my migraines! I take some tablets regularly due to my Cerebral Palsy. Baclofen is the main one since I hurt my back trying to live independently, (carer free,) without having access to the right help.

I rang my GP as I couldn’t cope with the pain. I find getting access to a doctor really difficult since the pandemic.

When I did get to speak to a doctor I was told I could take Naproxen, Codine, Paracetamol, Baclofen and Diazepam together if need be! This was a big difference from the cautionary tale I usually got. Diazepam is the only drug doctors didn’t want me taking long-term. Thankfully I have now come off all non-daily tablets. I find it crazy that society would rather I pill pop rather than get the treatment I need.

It is now July 2023 and I have just got to the top of the physiotherapy waiting list, received an appointment for my local pain clinic and have an OT that I can contact. I first wrote this post in October 2022. Maybe this is why pills are prescribed, doctors know that it takes ages to gain access to the appointments needed. It’s taken two years for me to get these appointments.

Different types of migraines

According to the NHS, there are three categories of migraines. To date, I have always had a migraine with aura. Aura in this context means symptoms. The three main types of migraine are:

Migraine without aura which has no warning signs at all.

Migraine with aura. This has warning signs like feeling numb and tingly, seeing lines in your vision, feeling dizzy or having difficulty speaking.

Migraine aura without headache, aka the silent migraine. This is where you get the symptoms above but without the headache.

Treatments for Migraines

Apart from painkillers, there are medicines called triptans which affect the serotonin in the brain to relieve the symptoms of a migraine. There are different types of these medicines sumatriptan is often recommended, according to NICE and works to narrow the blood vessels in the brain. This is based on the theory that migraines are caused when the blood vessels become too wide.

Medicines like cyclizine are used to help stop an individual from feeling or being sick. Not only can the effects of a migraine cause sickness but triptans can cause this effect too. Changes to lifestyle are recommended, depending on what triggers an individual. Relaxation techniques and acupuncture may also be an option.

For more information and help with migraines visit The Migraine Trust.

Happy New Lockdown

07/01/2021

Happy New Lockdown! This was how my brother greeted me on his first day back at work after the Christmas Holidays and I found it so equally amusing and depressing that I just had to use it for this post. I hope everyone visiting had the best Christmas possible and that New Year was a happy occasion for all my inclusivelivingconcepts readers.

New years eve Fireworks — New Year’s Eve Fireworks

Recruitment

New Year same…activities! Literally! Last year I wrote about how I had lost a PA due to health problems and this year, thanks to COVID-19, I will be recruiting again. I have no idea what this will look like during lockdown but as my Mom helpfully pointed out, I have to find people to interview first! The joys of living with a disability!

If I seem disillusioned and bitter about the process then, unfortunately, that’s an accurate picture. Getting access to the right support was horrid before, It is almost impossible at the moment! If any of you have any tips on how to make the recruiting process less stressful please let me know. I’m thinking of starting a support group for people who have lost carers/PAs this year!

hands clasping — Hands clasping in support

My lockdown plan

On a more positive note, whilst I feel pretty pessimistic about the recruitment process and Social Care in general, I’m determined that this year is when I get my ducks in a row! (Runaway Bride reference.) I’ve contacted The Disability Union, to assist me with getting my care package. I’ve signed up for the Lifebook Course to try and get a handle on how I want to actually live as all the assessments and stress has made it hard to see the wood for the trees. It may help or it may be new-age hype but I’m hoping for the latter. I’ll also be more active with Disability Horizons this year, writing and editing content. Check out my piece on free online courses available to stave off boredom and improve skills and knowledge during this latest lockdown.

I don’t know whether this new year equals a new me but I’m optimistic that it’s a year for change. What are your plans for this year? How are you feeling about the lockdown and the fact that there are now vaccines available?

I’d be interested to hear from people who have had the COVID-19 vaccine already. My disability, whilst sometimes frustrating, thankfully does not affect my health so I’m pretty far down on the list. A fact that I’m incredibly grateful for and at the same time I’m impatient for the world to be vaccinated so we can get back to whatever normal there is for us all. Who’s with me!?

Interview with Sam from PHB Hunters

05/11/2020

My first interview on inclusivelivingconcepts was with Sam. I hope to interview many people from the disability community. If you’d like to be interviewed please get in touch.

About Sam

Sam resides in North Wales and lives with a disability called Limb Girdle 2e Muscular Dystrophy which is a progressive condition, meaning her needs have increased/grown more complex over time. Sam is now forty and has been employing her own PAs since she was twenty.

To begin with, she did this with the help of The Independent Living Fund, a benefit that unfortunately no longer exists. When the Independent Living Fund was scraped, her local authority funded her entire care package, continuing to provide funds through her Direct Payment.

Agency Workers

This worked well until Sam’s Social Worker persuaded her to use an agency to carry out her care rather than employ PAs herself. At this point, her Social Worker applied for her to have half of her 24-hour care package funded by CHC. Sam agreed due to pressure. The lack of access to support, and her continued struggle to have a working contingency plan in place should any of her PAs be unable to work. However, as soon as this decision was made, Sam lost all autonomy and had very little or no say in how she lived her life!

Back with the Direct Payments Scheme

After a lot of battling with her local authority, Sam now employs PAs once again through the Direct Payment scheme, enabling her to live her life the way she wants to. She has this option as she is jointly funded by BOTH the local authority and CHC. This option is not available to those like Rhys who’s care isn’t jointly funded.

Sam campaigns with Rhys to try and ensure that all citizens in Wales, not least Rhys himself has the same freedom that she enjoys regardless of how they are funded.

Below are the questions I sent to Sam after I saw their campaign on the BBC website and later on Facebook, Welsh PHB Hunters (Every human being has the right to be free.) The questions were sent before I knew she had won the right to have her Direct Payment again. Rights should always be fought for!

1. How long have you had your current care package?

I’d say from March, as I’ve been able to hire my own PAs since then, through a jointly funded package. However, I now believe I had a jointly funded package for almost 3 years, but I was falsely told by social services that it was CHC funded and therefore I was unable to use direct payments to employ my own staff. I now distrust my social worker and the people who are supposedly there to help us.

2. Are the agencies that are assisting you currently person-centred in your opinion? I.e. do they listen to you?

I no longer use a care agency, but can say that when I did they all said they were person-centred, but that only went so far, my views and opinions weren’t listened to when it really mattered, and they were just a business trying to fill their contract requirements any way they could.

3. Do you have any say in how your care calls are structured?

Yes, I have complete control now. I do the rotas, ok holiday, and I am in charge of all employment matters. Although I am checked in on a lot by nurses and social worker, (pre covid.)

4. What reason have you been given for the discrepancy between the assessment carried out by Social Services and the one by NHS? Needs are needs surely?

This is a Rhys question but from my perspective. My social care team really wanted the monies to come from health to save them money, they did not support me at all, and it was the health side that agreed my needs weren’t nursing as the social care team were trying to suggest.

5. How did you meet Rhys?

I was talking with Rhys and we can’t remember exactly how we found each other! It was through our fight for care and somehow we started chatting over Facebook. Since then we have spoken every day and started a long-distance romance!

6. In August, you wrote a letter to the Welsh government. Why now?

I think we both wrote letters prior to this, mine began in February, but at that time I was unaware of Rhys’ campaign. Once I connected with Rhys, I upped the ante and began to fight for PHBs as well as for the framework on legislature changes for joint funding to be made clearer. We have since written to charities, disabled organisations, magazines, MP’s and AM’s. Basically, anyone who will listen and support us.

7. Why do you think the push to use agencies is so high, are they more cost-effective? In England, agencies are more expensive than hiring your own PA’s/carers.

They generally are not cost-effective, but I believe that the social care team see them as an easy solution to them, less paperwork and less face to face work. They leave any issues to be dealt with by the agency involved, which leads to more problems for us. CHC funded care must currently use agencies in wales, hence the fight for PHBs, I believe this is to pass over any accountability to the agency instead of the NHS, and due to the work needed to change the current framework. It isn’t about what is best for us.

8. I read on your Facebook page that Direct Payments are unlawful when using CHC do you know why? Has anybody explained this?

It’s just not allowed because of the current CHC legislation. If you are jointly funded it is lawful, but it is not well known, as I found out during my fight. It needs to be clearer for users and the organisations involved.

9. How is a second lockdown affecting you?

The lockdown is hard, I miss seeing my family and my niece who’s grown so much since this all began. It obviously makes a long-distance relationship harder as we can’t travel as much. I had plans to travel this year! 😂 I worry about covid obviously but my PAs are all taking precautions to safeguard me and I appreciate that immensely. 2020 has been a hard year for everyone.

10. What does a typical day look like to you?

This is probably more Rhys, as I have a PA 24/7. I can get up at a time of my choosing; toilet, eat etc when I want. My only constraint is being in bed by midnight, as I have a sleeping night and PAs have to have 8 hrs sleep. Breaks for PAs are quite flexible depending on our plans for the day.

11. What do you do to relax?

Photoshop, and artwork. I can spend hours doing this on my computer, as it clears my mind. I love a bit of Netflix, music and days out with family or friends (pre covid). I try to study something new as often as I can, but Rhys’ campaign has kept me busy since August, so I’m only doing short courses at the moment.

12. Have you been given a reason why individual cases can’t be heard but group cases can?

I think this is just policy for the heads of departments, such as Vaughan Gething and Julie Morgan. We are encouraged to contact our local ministers.

13. Can you explain a bit more about Independent User Trusts? Why are they not suitable for your needs?

We have had difficulties with this ourselves so I’m just going to use what we currently have.

The Welsh government are proposing Independent Users Trusts (IUTs). An Independent User Trust is described ‘as a commitment on the part of trustees to manage an agreed sum of NHS money (or other resources) in a way that puts the individual at the heart of decision-making and gives them choice and control in their life’. Confused? I know I am? I ask is this clear? Because we have struggled to get a clearer definition so bear with us a little.

IUTs are in fact one of the ‘methods’ that an individual can now use to manage a personal health budget when a direct payment is not possible, AS IN WALES Right? But we are not being given the option of utilising the other methods, just an IUT.

So it’s our understanding:

• There is a team of 6 trustees almost like a syndicate.

• You get to choose who those 6 people are “how generous”.

• After you speak to them, they then speak to the NHS.

• Decisions are made for you over how your care is provided, “bearing in mind it’s your care”.

• They control the purse. “So we never, in fact, see the money ourselves.”

So, they are making us answer to a group of individuals, which granted, we can choose, but they decide and then purchase that care for us!

Is this not completely obscuring the idea of independence? We are accountable adults, who have self-control over our own life’s, and finances! So why are they suggesting we are incapable of taking care of our care finances? The notion is completely condescending! The only thing that makes us different from everyone else, is a physical disability?

ITU’s Fail

In our eyes, this means that IUTs fail to put individuals at the heart of the decision-making process, and instead take away our choice and our control over our care. Which surely we deserve? It merely mimics the same system currently in place, just given a new name… In line with the Social Model of Disability, the Welsh Government says it is committed to disabled people fulfilling their potential and achieving their ambitions and dreams, by removing barriers that get in the way of such ambitions.

The Welsh governments current IUT plans are building these barriers up, rather than demolishing them, are they not?

We truly can’t understand how our own Welsh government thought it was okay, to put people who needed 24-hour care in a situation, where they don’t have any choice in who provides their care for them.

My thanks to Sam for answering my questions.

Having had several written conversations over social media with her, I have to say I completely agree that the proposed solution, Independent Users Trust’s, (IUT’s) does not give disabled people the freedom and autonomy that they are requesting. I can’t understand why a Direct Payment is available in one instance and not another! Judging from the campaign, I’m not the only one.

If you want to find out more visit the Welsh PHB Hunters Facebook page. They welcome any support, wherever you live and are currently looking for people who have experienced agency care to participate in an article they are writing. If you’re interested send them a message here.

The importance of choice and control

04/09/2020

One of the main reasons I started inclusivelivingconcepts was to talk about the importance of choice and control. Having access to different choices and control over how you live your life is a basic human right. However, people don’t always have choice and control. This is especially true when disability makes you reliant on other for basic needs.

Staff equals choice

I mentioned in a previous post that my PAs were starting soon and that I would share details with you lovely readers about my journey. My two PAs started the week of the 17^th August 2020. Both of them seem lovely and employing them is my first step back to choice and control since COVID-19. What I didn’t count on is that the agency that I’d contracted back in March 2020 to assist me would also want to start on the 17^th of August! I employed the agency while I was waiting for the paperwork on my PAs to be processed and completed. The DBS checks took forever even before COVID-19!

People are like buses!

The week starting 17th August 2020, I had seven different people come to my house! Worse they were invited! I was putting myself through meeting these people in the hope that I’d gain aceess to freedom and control in the long run. There’s a well-known expression about buses and them all coming along at once. After eight months of having no formal care suddenly people were everywhere!

This is very positive in one way as it gets things moving. It was obvious to me at age eleven and is now even more obvious at thirty-four that I can’t rely on my family forever. They deserve choice and control as well! I’ve moved out of my family home three times in my life so far but it has never stuck permanently because of my lack of choice, control and the barriers in my way!

Money facilitates choice and control

I’m still fighting for a bigger direct payments budget. Having the money to pay people for what I actually need would go a long way to removing barriers and afford me more choice. Money does that for everyone, disabled or not. Money makes the world go round!

My petition for more money to meet my needs isn’t going anywhere. Just recently my social worker applied for the emergency COVID-19 fund as CHC, (Continuing Health Care,) isn’t currently assessing people so there is no accessing funding from them! Despite this my social worker was told I’m not eligible and advised her to tell me to use a Shewee!

What is a Shewee?

A Shewee is a plastic device to enable women to pee standing up. Never fear lovely readers this isn’t going to become an in-depth account of my personal habits. I could do a whole separate post ranting about how if I could stand up I could probably transfer and not need the device in the first place! Let me know if you’re interested in reading that, but my current thinking is that I’ll bore you to death, so let me just say, in fairness, that some disabled people have apparently found it helpful.

I’ve tried it and many variations thereof and am unable to use them sadly. Not to mention that this device, if useful, would only solve one of the things I need assistance with. My Social worker has advised me to put in an official complaint and I’m still waiting for the payroll paperwork to be completed in order for my PA’s to be on my payroll and have payslips every month. This is despite the fact that they have now been working for me for almost three weeks!

Inclusive access gives choice and control

In other, more exciting news. I’ve started writing for Access Rating as a content writer. The company is run by disabled people and they aim to improve disability access by offering businesses access audits and encouraging people to record the accessibility of the places they visit. They have created an app that enables anyone to rate venues based on how accessible they are. It’s an idea that’s been done before via review websites but this is the first app that I know of. The rating system is really easy and takes less than 30 seconds unless you really want to add detail.

I’m really excited to be working with them as it helps me influence greater change and choice for a more inclusive society. The app gives everyone the chance to have their say and is free to download. Check it out and rate your corner of the world. 🙂

Personal Health Budgets give choice and control

If you’ve checked out my Facebook page recently you’ll see that I shared a link to BBC news which tells the struggle of a man in Wales to be allowed to manage his care package through a Personal Health Budget. You can probably tell that I am not a big fan of the way Social Care is run but I was genuinely shocked to learn that Personal Health Budgets aren’t an option in Wales! They may be a headache but they do offer the most choice and control for a lot of people.

What is a Personal Health Budget?

A Personal Health Budget is different from the Direct Payment I receive through Social Services. As I’m asking for a bigger care package my Social Worker is trying to get me funding via CHC. If this happens my needs will be fully funded at least partially by the NHS. I could still receive my money as a Direct Payment. As things stand at the moment Rhys and others like him can’t. The NHS decides what he receives and who provides that. I’ve since reached out to Rhys and been given permission to send him some questions. My interview with his partner Sam is now published.

I’m so grateful for the choice and control that I do have and having that inspires me to improve things for us all. This keeps me going, especially as for the last month both my electric wheelchairs require repairs! My private Power Chair has an as yet undiagnosed technical fault and the wheelchair given me by wheelchair services has unsuitable footplates and armrests meaning I can’t leave the house in either one! I have two chairs and I only need one to be working. When I next post hopefully they will both be in working order. What was that about buses?

Until next time.

Access to work?

28/02/2020

Access to work as a person with a disability can be tricky, to say the least. For those with an invisible disability, there is the dilemma of what to disclose. Being a full-time wheelchair user and dependent on others for care it’s obvious I have additional requirements.

Support with accessing work

I contacted a support service to help me find a job. I was told I’m better off on benefits and that I should apply for the Severe Disability Premium benefit. I’d heard of this benefit and the top-up would make life easier. People are only eligible if they already receive certain benefits. I received qualifying benefits at the time so I filled in the forms and applied.

Is Severe Disability Premium benefit means-tested?

Having applied for the benefit I found out I don’t qualify for the Severe Disability Premium because I have savings of over £6,000 and I also live with my parents. If I had savings less than £1500 I would’ve been sent a form to fill in that asks me to declare my income.

Too disabled to work?

As I have high care needs working could affect my benefits making me worse off financially. If employed I would have to pay for my Direct Payment. I can’t afford this! My care package doesn’t enable me to work or currently meet my needs. Although I have 24/7 care, the hourly rate I can afford to pay is £11 an hour! This is barely above minimum wage and too low to attract competent staff that will enable me to live not just exist! Accessing work right now isn’t possible sadly.

Society seems designed to have me sitting at home, wilting from boredom? People with care needs do work and have care packages that give them choice and freedom. They often have some form of NHS funding known as CHC which provides care free. This is because they have health needs that require specialist care.

The access to work government scheme

The Access to Work scheme helps with grants for equipment and or support if you have a disability or mental health condition. To be eligible for the scheme you need to:

have a physical or mental health condition or disability that means you need support to do your job or get to and from work

be 16 or over

be in paid work (or be about to start or return to paid work in the next 12 weeks)

live and work (or be about to start or return to work) in England, Scotland or Wales. Northern Ireland have a different scheme. Unfortunately the Access to Work isn’t available in the Channel Islands or the Isle of Man.

I will be applying when I am in a position to have a job and I’ll write a separate post about how to apply. For now I’m focusing on my journalism studies with Ability Today and am seeking advice on how to get the right support from my local council.

What do you think about the barriers surrounding accessing work with a disability or health condition? Let me know. Let’s make employment be more inclusive. Share your stories here.

Social Services

Are migraines disabling?

Substandard Care causes massive stress!

Are migraines a disability that qualifies a person for benefits?

Medication for migraines

Different types of migraines

Treatments for Migraines

Related posts:

Recruitment

My lockdown plan

Related posts:

About Sam

Agency Workers

Back with the Direct Payments Scheme

1. How long have you had your current care package?

2. Are the agencies that are assisting you currently person-centred in your opinion? I.e. do they listen to you?

3. Do you have any say in how your care calls are structured?

4. What reason have you been given for the discrepancy between the assessment carried out by Social Services and the one by NHS? Needs are needs surely?

5. How did you meet Rhys?

6. In August, you wrote a letter to the Welsh government. Why now?

7. Why do you think the push to use agencies is so high, are they more cost-effective? In England, agencies are more expensive than hiring your own PA’s/carers.

8. I read on your Facebook page that Direct Payments are unlawful when using CHC do you know why? Has anybody explained this?

9. How is a second lockdown affecting you?

10. What does a typical day look like to you?

11. What do you do to relax?

12. Have you been given a reason why individual cases can’t be heard but group cases can?

13. Can you explain a bit more about Independent User Trusts? Why are they not suitable for your needs?

So it’s our understanding:

ITU’s Fail

My thanks to Sam for answering my questions.

Related posts:

Staff equals choice

People are like buses!

Money facilitates choice and control

What is a Shewee?

Inclusive access gives choice and control

Personal Health Budgets give choice and control

What is a Personal Health Budget?

Related posts:

Support with accessing work

Is Severe Disability Premium benefit means-tested?

Too disabled to work?

The access to work government scheme

Related posts:

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