Friday, 25 July 2014

Council Tax reduces Disability Care Contributions

Currently a lot of people who had previously been eligible for full Council Tax Benefit are finding themselves hit by Council Tax bills. This includes many people on very low incomes unable to simply "go and get a job", such as carers and disabled people on ESA.

There is however one silver lining for disabled people who are paying social services for their care. This new policy might be cushioned slightly by a reduction in their contribution to their care costs.

Social services are supposed to deduct the amount paid in council tax from what the disabled person pays them towards their care.

Anyone who has had a financial assessment from social services and is paying toward their care should check to see whether council tax has been taken into account. (This will normally be listed under "weekly allowances".)

(Note: see below for comments re Bedroom Tax and PIP.)

Reasoning

The reason behind this can be found in the fine print of the "Fairer Charging Policies for Home Care and other non residential Social Services"

Paragraph 23 states that
Housing costs and Council Tax should be assessed net of any Housing Benefit or
support under the local Council Tax Reduction Scheme.
"Income should be assessed net of any Income Tax and National Insurance contributions payable and net of housing costs and Council Tax."
The thing to remember here is that "Income" for social services is not someone's actual income but the "eligible income", ie the income that is earmarked for care.

For instance to encourage disabled people to move into work, earnings and tax credits do not count as income. On the other hand benefits such as ESA do.
So rather ironically, someone on a salary of £50,000 pa would be said on paper to have an income of £0 per week, whereas someone on ESA has an income of over £100.

Social services cannot take as much money as they like, but must leave the disabled person with "Income support +25%".
They must also take into account essential disability related expenses, although in practise this varies wildly from council to council.
This is the "Fairer Charging Policy".

So essentially social services work out the disabled person's income and subtract

  • Any housing costs left over after housing benefit, 
  • Any council tax left over after council tax reduction scheme,
  • Earnings, tax credits etc
  • Benefits which aren't allowed to be used for care (eg mobility DLA)
  • Disability expenses

They then take anything left over (if possible) while still leaving the disabled person with money equivalent to "income support +25%".

Note: Care contributions can vary greatly dependent on what disability premiums people are eligible for and how generous councils are when taking into account disability related expenditure.
Many people don't have to pay anything. My own contribution has been as high as £96 per week and as low as £56 per week.
Ironically when I could still work and earned twice as much as I do now I didn't pay a penny!

Very Important Comment regarding Bedroom Tax


Given that social services must take into account housing costs there is a query as to whether this includes the bedroom tax for those affected by it.

The following (paragraph 23) would indicate that it should:
Housing costs and Council Tax should be assessed net of any Housing Benefit or
support under the local Council Tax Reduction Scheme.
It could be argued that the bedroom tax is a housing cost left over after housing benefit has been paid. If so, then the disabled person's calculated "income" is lower and their contribution should either drop by that same amount (if possible) or drop to 0.
For instance if someone was paying £30pw, they would only pay £16.
If someone was paying £9pw, they would now pay £0.

Disclaimer: While I know for certain that some social services do take council tax into account (my own do), I do not know their policy with regards to bedroom tax. However given this guidance it could well be worth a query.

Comment regarding DLA vs. PIP


If social services only provide day care then they can only count mid rate care DLA as income even if the disabled person receives the high rate of DLA.
As PIP doesn't differentiate between night and day care, the new rules state that that social services are justified in counting all of PIP as income.
This means that someone on mid rate DLA or standard PIP who is upgraded to enhanced rate PIP might not see a penny of it. It could be swallowed up in care contributions.
In practise the government is leaving this to the discretion of individual councils. In the long term this means that we can expect to see a postcode lottery as to whether individuals have the entirety of their enhanced PIP award taken as a care contribution.

An Example of a Financial Assessment


A financial assessment might look something like this
Let's consider a hypothetical disabled person receiving a care package worth £140 in direct payments.
They are in the support group of ESA but are able to do 2 hours of permitted work per week for which they receive £20 in earnings.
They also receive DLA high rate mobility and mid rate care.
They receive LHA but have to top up their rent by £8.00 per week.
Social services have recognised disability related expenses with regards to their wheelchair, other specialist equipment and an alarm system in case of falls. However they refuse to take into account dietary requirements, heating and other increased costs.

Weekly Income (including DLA both care and mobility):

  • DLA Middle Rate Care £54.45
  • DLA Higher Rate Mobility £56.75
  • ESA core component  £72.40
  • ESA support component  £35.75
  • ESA Enhanced disability premium  £15.55
  • 2 hours permitted work per week (earnings)  £20
Total = A = £254.90

Weekly Allowances: (disregarded income such as earnings and benefits not earmarked for care, money set aside for disability expenditure, council tax and housing costs, amount required by law to leave to live on)

  • DLA Higher Rate Mobility -£56.75
  • 2 hours permitted work (earnings)  -£20
  • Specialist Equipment -£6.73
  • Wheelchair maintenance -£3.85
  • Alarm button service  -£3.50
  • Council Tax  -£5.76
  • Rent Top Up -£8.00
  • Weekly Allowance under 60 (= Income support +25%) -£130.31

Total = B = £-234.90

Net Disposable Income = A-B = £20
Cost of Care Package = C =£140 (14 hours of direct payments at £10 per hour)
Care Contribution = the smaller of C or A-B, = £20.

Thursday, 17 July 2014

Assisted Dying. The Slippery Slope is here already.

Lord Falconer's Bill on Assisted Dying will be debated this Friday.  This is a bill which evokes strong emotions whichever side you agree with.

For my part I do not support the bill, something I have come under a lot of attack for. Unfortunately these attacks have but strengthened my reasons,  in particular as I am condemned as having no compassion for people such as Tony Nicklinson.

I have a lot of arguments but for the purposes of this post I am going to concentrate on a single aspect: the "slippery slope". As a disabled person this is of particular concern to me.
I have been told very bluntly by strangers in the street "If I were you I'd kill myself". Acquaintances have said that they don't know how I live the way I do and others that they couldn't live if they were "like me".

So it isn't a stretch of the imagination to see that a newly disabled person could easily want to die. It takes time to adjust. But worryingly they would not receive the support they require from many people around them as even subconsciously they would be busy telling them that in their position they'd also rather die. It is a subtle form of pressure.

Of course people reading this are busy thinking "But the bill doesn't apply to disabled people".
Well no, it doesn't.
But the problem is that the "slippery slope" has already started.
Who are the people fronting the argument for assisted dying?
Who are the examples who have convinced people like Lord Carey to change their minds?
Are they terminally ill people who the bill will help?

Well... no. They are disabled people.
We have people like Tony Nicklinson. Or Terry Pratchett.
If people are campaigning and voting on the basis of these examples then in their minds they are already applying assisted dying to other people outside the law: specifically, disabled people.

I wonder what will happen if the bill becomes law but the MPs, Lords and general public then realise that it does not apply to the cases they thought it did.
What will happen when the next Tony Nicklinson comes along and cannot avail himself of the newly passed Assisted Dying Law?

Finally Dignity in Dying repeatedly says this is not about disability but just terminal illness.
So I leave you with the foreword on their website from their patron Professor Antony Grayling:
I believe that decisions about the timing and manner of death belong to the individual as a human right. This is especially relevant in cases of terminal illness, painful or undignified unrelievable illness, exhausting old age, and other circumstances where an individual might wish to make the autonomous decision to end his or her life. I further believe that it is wrong to withhold medical methods of terminating life painlessly and swiftly when an individual requests them on the basis of a rational and clear-minded sustained wish to end his or her life.
As long as disabled people are used to front the argument for Assisted Dying, as long as Dignity in Dying includes old age, chronic illness and "other circumstances" as valid reasons, I will worry about the "slippery slope" and oppose the bill.

Monday, 23 June 2014

PIP fiasco! But where was the press 2 years ago?

A little over 2 years ago, I and a handful of other disabled people wrote what is now known as the Spartacus Report.
We exposed the sham consultation run by the government into the abolition of DLA for working age claimants and its replacement by PIP.
Thousands of disabled people came together on social media in an unprecedented campaign to highlight the report and the importance of DLA in their lives.
Together, we sent the report to all the representatives in the House of Lords and all MPs.

Alarmed by the proposals and seeing the harm they would cause, we were doing whatever we could to mitigate the damage the then Welfare Reform Bill would do. Voting was still ongoing, the bill was not yet law, and it seemed there was still a chance to avoid disaster.

But we ran into trouble. No one in the media was interested. Yet the government had disobeyed its own rules. It had misled parliament. It was going to enact laws which would harm thousands of disabled people. Surely this would be enough to get the press talking?

The answer was an emphatic "No". Why? The same question came up again and again.
"Where is the human interest angle? Do you have an example? Can we talk to someone "suffering" please?"
We explained that no, no one was suffering yet, but that if nothing was done then there would be plenty of examples in a few years time. Our aim was to prevent that from happening in the first place.
The press was implacable. No sobbing disabled person? Then no, sorry. No can do.

As a lot of people know, we did eventually get coverage. This is only due to the fact that voting in the Lords swung in our favour against the government and this was, in part, put down to the impact of our report.
Questions were raised in the Commons by prominent MPs. It started to become a story.

Thanks to Baroness Tanni Grey-Thompson an amendment was added attempting to get PIP halted and a proper trial imposed. Unfortunately by now the government was desperate to avoid an embarrassing 4th defeat and the proposal was narrowly defeated by just 16 votes.
In any case it would hardly have mattered. The government invoked the archaic law of "financial privilege" to override all amendments the Lords had voted for. I have to say that this for me, was the day I realised democracy is dead.

Two years on and PIP is indeed failing. Inquiries have been launched. The Public Accounts Committee has deemed it a "fiasco" and condemned the lack of a pilot scheme, saying
"The department's failure to pilot the scheme meant that the most basic assumptions, such as how long assessments would take and how many would require face-to-face consultations, had not been fully tested and proved to be wrong."
This has resulted in "significant delays, a backlog of claims and unnecessary distress for claimants who have been unable to access the support they need to live, and in some cases work, independently".
They also revealed that claimants had been forced to turn to food banks, charities and loans.

There is no joy in "I told you so" though.
The press is now gleefully and ghoulishly commissioning articles and reports about terminally ill patients going without any support in the last few months of their lives or disabled people resorting to food banks.
While these articles need writing, I question the motives of those commissioning them. They can spare me their crocodile tears. They have finally got their "human interest" stories. Is this not what they wanted?

In my eyes they are complicit in this. Where were they when they were needed? If they really did care, they would have ensured that what the government was doing was fully reported and that the public was made aware of what was happening. Then maybe, just maybe, this whole thing could have been averted in the first place.

ADDENDUM: I would like to make clear that I do not hold individual journalists (such as the ones who have written the pieces linked to in this blog post) personally responsible for this lack of interest and demand for "tragedy". I do however hold the various newspapers and TV channels responsible, with a flawed commissioning process.

Wednesday, 30 April 2014

#BADD2014: Support and Independence

This is my submission for #BADD2014, Blogging Against Disablism Day. Please do follow the link to read other blogs too. A second submission can be found here, and is an account of my time in academia.

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Attitudes towards both what is and our rights to an independent life could possibly still be one of the greatest forms of disablism we can see in our society today. Despite great strides forwards our independence is still considered an expensive luxury to be given or taken away.

For the past 17 years I have needed "personal care". This has been provided via social services in a number of ways, at first through care agencies and later through personal assistants I pay via direct payments.

I will occasionally tell people that this support has allowed me to stay "independent". This completely throws some people. Some have even laughed in my face.
"How can you possibly be independent? You need help with basic things like getting dressed, washing, cooking, heck, even cutting up your food!"

I consider this a failure to understand what independence really means. I have always made my own decisions on every aspect of my life.  This includes the small things like what I have for dinner, what time I go to bed, or simply what I watch on TV or what I do for leisure or social activities. But it has also included the big things like what job I did, where I lived, what I spent my money on, whether I went away for a weekend or holiday, and who I chose to have friendships and relationships with.

The fact I need help with basic tasks simply means I require support in order to remain in control of my life. And that is what I consider independence to be about: control, rather than trying to do every little thing all on my own.  Does it matter that someone else cooks and cuts up my food? No. What does matter is that I decide what I eat and (roughly) when I eat it.

Refusing to view me as an independent adult is, to my mind, a form of disablism. I am not considered a proper equal simply because I cannot perform a few physical tasks. Yet in every other respect and in every aspect that matters, I am living exactly the same life as everyone else. I have the same responsibilities and the same rights.

After all, to some extent everyone requires support of some kind, whether they realise it or not. For instance parents may be reliant on their child minders in order to go to work. Commuters may be reliant on their train or bus drivers. Disabled people are simply reliant on their personal assistants. The truth is that the difference between disabled and non disabled people is not really as great as people imagine.

Admittedly the consequences of removing that support are far greater for the disabled person than for the non disabled person.  Removing or even simply cutting that support could impact on the very basics of life such as hygiene, dressing and eating and would certainly prevent them from continuing many social, leisure or work activities.

This is why support is so crucial and must not be cut, even in these difficult economic times. It is vital that councils somehow continue to fund the support disabled people need. The price otherwise will indeed be our independence.

However, with council budgets being squeezed year by year,  care thresholds being raised, caps being placed on community social care, disabled children being described as "burdens", the ILF being closed down with no clear budget replacement, social care funds not being ring fenced and the rationing of care hours (eg only microwave meals allowed, women told to cut their hair to shorten shower times, only 1 shower allocated per week, removal of social activities help, removal of night time care in favour of incontinence pads, etc), it would seem that for many that price is not too high in the name of economy.
Apparently our independence is deemed a luxury, not a right.

Saturday, 26 April 2014

Mental Health Failings, a friend lost

TRIGGER WARNING: suicide, self harm
Scroll down for blog post.


























A friend of mine died last night.
She committed suicide while in the "care" of a mental health unit.
She had been ill for a long time and had a long history of self harm and suicide attempts. During the past couple of years she probably spent more time as an inpatient than out.
Though I'm grieving, another overriding emotion is anger. This should never have been allowed to happen.

I had already been very angry at the care she received at a previous mental health unit.
When I visited she did not seem to be properly monitored.  Staff turnover was high, with many agency workers who did not always seem to know her needs.
Her treatment and medication reviewing was poor and sometimes postponed for over a week due to "timetabling".
She was once physically assaulted by another patient. Over another period of time she was regularly followed around by another male patient who developed a fixation on her. Staff did nothing about it.
While there she regularly "succeeded" in harming herself, badly enough to require serious ongoing hospital treatment.
She also "escaped" from the secure unit several times and then attempted suicide.

What kind of "care" is that??! If my friend wasn't safe in the mental health unit, then where could she be? What kind of "professionals" allow that to happen?

In later months, after my friend had left the area, the unit she had stayed in dramatically failed a surprise inspection and was threatened with closure as "mental health patients were put at risk". Among other things it was found that:
Drugs were “not always handled appropriately” while staff “did not always ensure that medicines were safely administered”.
Patients were “at risk of not receiving appropriate treatment to meet their needs” as vital care plans and risk assessments failed to ensure their safety and welfare.
In a way I was relieved. My suspicions were confirmed. But this surely meant that this was just one bad apple and that any future care she received elsewhere would be much better?

Now, in yet another mental health unit, my friend has once again been let down.
She wasn't properly monitored.
She wasn't safe.
But this time it won't matter what excuses are made.
It won't matter what "lessons are learned".
For my friend it is too late.

Monday, 21 April 2014

#BADD2014: Academic Battles

NOTE: Since this was posted so close to May 1st, I am also submitting this post to #BADD2014, Blogging Against Disablism Day. Please do follow the link to read other blogs too. My "official" BADD2014 post can be found here.
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Chatting and posting on PhDisabled has really made me think back to my PhD days. Many sick and disabled PhD students are struggling with many issues directly related to disability and illness which have a great impact on their research.

It was only when I started to share some of my own stories that I realised just how many battles I had had to fight. While my chronic illness was pretty well supported, as a visibly disabled student using an electric wheelchair there were huge needless issues ranging from access and "health and safety" to outright stereotyping.

In my last post I addressed how I worked through my PhD with a chronic illness. In this post I go through some of the many unnecessary battles thrown up during my time as a PhD student and beyond, showing that disablism is sadly alive and kicking.

 

Visible Problems!


Strangely, being visibly disabled was, for me, less well dealt with than my illness. This is despite the fact that you would have thought being a wheelchair user at the start of the twenty first century was no longer a big issue. The Equality Act 2010 was still a few years away, but the DDA had already been in place for many years.

Yet for instance I was at various stages banned from my own building, banned from the library (I was a "fire hazard"), banned from my office a second time for a whole 3 months while health and safety argued over whether I could bring in my portable oxygen.

Even when I eventually won the right to enter my own office I was placed under strict time restrictions due to my personal evacuation plan which involved 2 members of staff getting me out via the fire-proof lift. I could only be in the building if both members of staff were present.
Ironically, this evacuation plan would not be used in the event of a real fire as it would be "too dangerous" for said members of staff. I would instead be left on my own in the presumably burning building until the fire crew arrived. Kafkaesque? Yes. But true.

I was the only person in the whole department who had to arrange my own private transport to conferences etc, paid out of my own private money and then claim it back months later. This was due to the fact that the university did not have a contract with a company which owned wheelchair accessible vehicles.

No one told course or talks organisers that a wheelchair user would be present. It was left to me to find out what courses I'd be doing, who was responsible for them, and to let them know about my access requirements. (This appears to be common and an unnecessary addition to a disabled PhD student's workload.) Unfortunately this was often repeatedly forgotten and talks had to be moved at the last minute.
This was not much appreciated and I, rather than the organiser, was blamed, as shown by emails sent to all staff saying
"Sorry for the inconvenience, we've had to change the room for the wheelchair user AGAIN!". 
Imagine how I then felt as we traipsed across to the other side of the campus in the pouring rain.

I was often the butt of annoyed "jokes" about this. The whole situation was unnecessary. I raised the issue of the emails, pointing out that information about the room change could be given without raising the question of wheelchair access, but was told that I was being "too sensitive".

During my time in the department a project was started with the installation of great new technology whereby several lecture theatres at different universities could be linked up via an IT network. A talk, seminar or lecture could be given remotely and followed at several universities at once, a bit like skype on a grand scale.
There was dispute as to which room this system should be installed in. To my horror I found out that a non wheelchair accessible lecture theatre was a strong candidate. 
I was appalled, particularly as due to deteriorating illness, travel was becoming more difficult and I intended to make use of the technology. I also felt that disabled academics are particularly likely to need this and in any case it would also be wrong to exclude us from any lectures given via this medium. This went not only for me but for any future students and members of staff as well.
This was eventually taken on board after I talked to several people, and the chosen room was wheelchair accessible. However this created some bad feeling due to the fact that it was smaller than its inaccessible counterpart and I received some nasty comments as a result.

Due to the age of the building a standard sized wheelchair couldn't get around, and so I used a smaller wheelchair when getting around during my office hours. I became the victim of bullying on the part of one particular person who took exception to the fact that my outdoor electric wheelchair needed to be stored in their larger open plan office while I used my indoor wheelchair. This person verbally abused me and even somehow physically removed my wheelchair and left it in the corridor. Rather than address the issue I was told that person was leaving soon (in a couple of months) and perhaps I could work from home until they did. In the end I made arrangements with another colleague and left my wheelchair in their office. However this was both unacceptable behaviour and resolution of the problem.

Finally, I often encountered what I would term "casual disablism" in that people assumed that I was not a PhD student or a researcher simply because I was a wheelchair user.
It was very common for people to ask why I was in the university building where I worked. I distinctly remember one conversation (but by no means the only one):
What are you doing here, love, can I help you find the way out?
No thanks, I'm fine. I work here.
Oh, that's nice. Have they found you a job in the office?*
No, actually I'm one of the researchers. I'm on my way to my own office.
Really? I didn't think people like you could do that sort of thing
*Not that there would be anything wrong with an office job, but it was the "found you" (as though it would be "make work") and the belief that I couldn't possibly do anything else which was rather telling.
While I was still establishing myself as a researcher and people didn't yet know me, I also had the following conversation at a conference
Hello, are you lost?
Um, no. I'm the invited guest speaker...
Oh my goodness. That's amazing. You'd never think so, would you?
This was by no means the only example and is rather worrying when you consider what it reveals about fellow academics' attitudes.  This was semi-confirmed when I phoned up to confirm wheelchair access for my first important academic job interview and I was asked if "I was sure I was up to the job".

When I did finally graduate one final hurdle was set in my path. The university had 2 graduation halls. One was wheelchair accessible and the other not.
The university refused to guarantee that my ceremony would be held in the wheelchair accessible hall. I was told I would have to wait for the timetable (issued 2 weeks beforehand) to find out.
No one in my department was willing to help. No one seemed to think this was a problem and everyone just thought it was acceptable to "wait and see".  Yet while my fellow PhD students were eagerly making plans for the day, I was nervously waiting to find out if I could attend my own ceremony. I had to make reservations and rent out gowns etc without knowing whether I would be able to use any of it. As it turns out, I was lucky.
I made an official complaint about the process, pointing out that having an accessible awards hall does not make the graduation accessible if you are not guaranteed to have access to it! I do not know whether changes have been made. This is a typical example of how something can look accessible on paper but not in practise.

Later on, after my PhD, when I obtained a research fellowship I discovered that there were fundamental flaws in the application process for any future grants I might need which were discriminatory. I won't go into them here but it creates a strongly uneven playing field for disabled people who get past the early stages of an academic career.


Still worth it


Yet despite all these setbacks and fights, no one should lose sight of the fact that studying and working in academia can be hugely rewarding and for me was worth every single battle.
I am also not convinced that academia is particularly worse than anywhere else.  I have heard so many stories of disablism within other industries that it seems to be a problem within society, not academia per se.
That said, I think academia needs to wake up to the fact that it still has a long way to go before it is fully inclusive and not rely on the fact that it is "better than 20 years ago". This may be so, but there are large improvements to be made, and with the recent cuts to DSA things look set to get worse rather than better.

My PhD with Chronic Illness

Chatting and posting on PhDisabled has really made me think back to my days as a PhD student.  Many current sick and disabled PhD students are struggling with issues directly related to disability and illness which have a great impact on their research.

I completed my PhD with both a very visible "disability" and a long term chronic illness.
The disability didn't really impact on my work but, surprisingly was horrifyingly badly accommodated by the university (I have written another entire blog post on the subject!).
My illness on the other hand had a very big impact on how I worked, but luckily I was very well supported by the university.


Adapting to Chronic Illness


The single most important thing was that I had a very good relationship with my supervisor and I made sure that he had a good understanding of my illness. This did mean revealing diagnoses etc. Not everyone will be comfortable doing this, but this was a choice I made and it worked well.

We had gone over in detail what I could and couldn't do.  He knew in advance that I would NOT be doing a normal working week and that there would be periods of time when I wouldn't do any research.

One thing I soon found is that there is no such thing as "normal" if you are sick.  I needed to forget about what everyone else was doing and concentrate on what worked for me.  It really didn't matter if I did things completely differently to everyone else. Different is never bad per se as long as I get where I need to.  Luckily I had the full support of my supervisor in this regard.

Split Office + Home Working:


My PhD was in Mathematics, so I needed no special equipment and technically could work anywhere. As one of my "disability accommodations", the university allowed me to work from home as much as I liked, even paying for a home printer, laptop and broadband.

When I was "well" or "as good as it gets", I still couldn't work all day. I always felt at my worse in the afternoon and it soon became clear that working at that time was simply inefficient.  Since I was definitely going to have to have time off and there is no official scope for that in a PhD (there is no equivalent to sick leave), I needed to make every single hour count. So I always worked when I felt at my best, regardless of what time it was. Conversely I didn't make myself work when I felt absolutely awful. The quality of the work was generally poor and I just made myself feel sick for longer.

So I started only going into work in the morning and coming home and resting or even sleeping in the afternoons. I would then maybe do a few hours late evening (eg 10pm-1am).
On the other hand I was often up at 3am in pain or with other symptoms. I soon found that that time could be put to surprisingly good use.  I took to jotting down ideas and/or reading "easy" research papers.
As time went on and my illness deteriorated I would alternate days I went to the office. For instance I might go in Mon, Wed, Fri and work fully from home Tues, Thurs.

I asked that most PhD seminars and teaching get timetabled in morning slots. This was mostly done and was of great help to me throughout my time as a PhD student. The location of said seminars was not always so well looked after, but I was very impressed with the way the university accommodated this particular requirement.

Conferences or talks at other universities were extremely difficult for me and I had to rest for long periods after. I worked from home for days after any such event. I went to less conferences and events than my fellow PhD students and as such these were carefully selected to maximise their use and impact.

Housebound: (12 months on and off)


Other times I was housebound but still well enough to do actual research (ie working on my own new original ideas). During those times I plugged away and kept in touch with my supervisor by email and skype.
Roughly 12 months of my PhD were spent this way on and off. These housebound patches were unpredictable. I might be housebound for a week here, a couple of months there and so on and so forth.

The biggest problem here was probably not academic but emotional, mental and social. The lack of contact at the office is obviously very isolating. Throughout my PhD I would always try to go into the office when I could, not really because I needed to for work, but because it was good for me mentally.
Luckily I pretty much lived on campus and was able to get a social life going by inviting people to my flat. This became a regular event with people coming round for lunch and evenings several times a week. This really helped prevent me becoming lonely and disconnected from university life.

Hospital and/or Horribly Sick! (8 months on and off)


There were also times when I was either in hospital or housebound but so ill that original research  just wasn't possible. Those periods were spent doing "background reading". Some of it was even undergraduate or Masters level. If nothing else it kept my brain ticking over. Roughly 4 months of my PhD was spent this way.
This might not have been so bad had it been under my control. The thing is that it happened at unpredictable times: a few weeks there, a month here, a few days there and this was extremely disruptive.

At least 4 months were spent in hospital/recovering and so ill that even background reading was impossible.
I was "lucky" enough to get a very good result (proof of a new mathematical theorem) quite early on in my PhD which meant that my success was pretty much assured from 20 months in. Therefore because things were going so well, my supervisor was happy to let me just rest until I felt well enough to start working again.
Thus I was not required to take a leave of absence, avoiding the bureaucratic and financial difficulties that many sick and disabled PhD students face at precisely the time that they are at their lowest.
I am of course very aware that I was extremely fortunate in that regard and that not everyone would be able to do this.

Success thanks to flexibility but at a cost


Working this way I was able to complete my PhD on time. I think the thing that got me through was easily being able to switch between my 3 different working modes: very sick (home background reading/hospital/recovery), sick (housebound but doing research and in contact via email/skype), "as good as it gets" (research by morning office hours+ home working, + occasional conference/talks).

However I recognise that spending an enforced 8 months doing background reading or even nothing at all, yet still finishing on time will not be possible for everyone. The subject I was doing helped a lot (no lab work + an early "result") and I think this was the deciding factor. I think I would have struggled far more in other subjects, however good I was at them and would have needed time off, with all the financial and administrative issues that entails.

Ideally there would be provision in the system for someone like me who is ill: ability to go part time, extra funding, etc. I would certainly have welcomed it and felt under less pressure. But there isn't. At most you can defer, but are left without funding or support.

Despite the fact that my PhD couldn't have been going any better, I continually felt very much that I was in a "sink or swim" position, and under tremendous pressure to "be well". Ironically this was likely to be counterproductive and make the illness worse. In the later stages of my PhD I had to keep reminding myself that things were going very well and I did have some leeway if I got sicker.
Additionally I was always playing "catch up".  I would be on target and then have a period of bad health and feel that I was behind again. My trick in the end was to try always to be slightly ahead if possible, (as long as I didn't make myself sick in doing so).
This came at a big cost. Although I did have time for a few social evenings as long as they took place at my own flat, most of the time every "useful" waking hour was spent working. The rest of the time I was resting or simply really sick. So although I was successful in the end, it was at great expense, sacrificing nearly all of my leisure time. I imagine this is something a lot of my fellow chronically ill PhD students can identify with.
I think these mental, emotional and physical burdens for sick PhD students cannot be emphasised enough. It is a huge addition to an already difficult task.

After my PhD, when I got my funding for my first research fellowship I did, in fact, go 75% part time. This finally took some of the pressure off at the times when I was very ill and unable to work at all. I also had some time to enjoy a more balanced lifestyle. Emotionally and mentally things became much easier.

If more people with chronic illnesses are to succeed then more part time work and study and the ability to flexibly slip between them should become available. This IS possible and the best example I know of is the one offered in the Dorothy Hodgkin Fellowships. I would love to see more research councils and universities offer similar schemes in the future.