‘I wish my stroke had killed me!’

Follow my personal commentary on Twitter @kateallatt?

This is shocking….

Do you identify with this after stroke?

Stroke campaigning is NOT all about PREVENTION.

‘I was always very independent. Now walking from one room to another wears me out.

My friends & sisters turned their backs on me.

I hate living.

I wish my stroke had killed me.’

We are failing actually stroke survivors in our constant quest to PREVENT stroke.

Charities and government please LISTEN to these views from  anonymous patients and people affected by stroke:

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‘It amazes to see how selfish some people can be. They can try to justify it by saying it’s just too hard, or that the stroke patient isn’t the same, but that’s just life. Life gets hard and things happen that flat out stink. That in no way should affect your commitment to a loved one. My husband’s family rarely come to see him (maybe one person will come once every 3-4 months and stay for maybe an hour) and they only live about 30 minutes away. I know it bothers him that they don’t come, so I continuously invite them, but they always say they’re just too busy. I understand being busy, but if you can’t make time once a month or so to come and check on a nearby brother or son that needs you, then you need to look at your priorities.’

‘We have similar problems and I look at in that they have the problem! What bothers me is when they come and try to tell me and Paul how we should be doing things! That’s none of their concern they should simply come and visit your relative, and show support in that way. But nothing stranger than folk! Xxx’

‘I can’t count the number of times I was told, ‘Don’t ask me to go back it’s was just too hard,’ like it happened to them. I had to release my demons & digest my trauma, I was felt muzzled.’

‘…people need to get over themselves and think of how the stroke survivor feels. You don’t like hospitals? Neither does the stroke survivor. Visit them anyway. It’s hard on you to see a loved one in this condition? It’s hard on the stroke survivor to be in this condition. Be there for them anyway. To show true love is to put down your own feelings and hang-ups and be 100% there for the one you love.’

‘People are just selfish though how do they think we feel looking at our Loved Ones in their new post stroke conditions? It makes me mad I would rather they just said I can’t be arsed, at least you would know where you stood. People just can’t be honest, scared of hurting our feelings, well compared to what we have been through their opinions are nothing!’

‘Sometimes I feel as though its me and the boys up against the world. All I can say is thank god we’ve got amazing friends! Family gave good support at first but now we rarely see them, the majority haven’t visited for over 6 months which shows no support to my husband or our kids. People seem to think that sporadic text messages and emails are sufficient to keep in touch with my husband whilst my uncle who’s in his 70s and has just had heart surgery comes to see my husband from his home 20 miles away every couple of weeks. I think I’m better without the support and quite frankly the irregularity of it totally pisses me off. I hold grudges, a bad trait I know but that’s just how it is!’

‘To see the world’ or ‘for the world to see you?’

…. a great quote I read on Twitter recently, don’t you agree?

Truthfully, I was so proud of what I personally did to recover, against all the medical odds in hospital and beyond, for a few months back in 2011/12 that for a while I unhealthily ‘believed my own Kate Allatt press’.

However, I have to say that still during that period I very much harnessed that global media attention to voluntarily (and very cheaply) build my international & credible internet-based stroke charity – Fighting Strokes.

All my back-to-back press interviews,TV & Radio appearances surrounding the launch of my 1st book – Running Free – made it possible to launch my global charity ‘all-in’ for less than £480!

So was that all bad?

I am absolutely passionate about stroke recovery and locked in syndrome, (to the point my own loved-ones have never understood it, though increasingly they seem to now.)

Worldwide there has been so much positive progress for others touched by Fighting Strokes, since January 2011.

I will always try to represent patients who now suffer like I once did, by trying to influence stroke recovery for all; and visiting patients & their families; to reaching out over social media; to writing self-help stroke recovery books/apps etc.

I’m committed to influencing working-age, stroke survivors by helping them return – should they want – back to paid employment, (As opposed to the often having to returning to voluntary work in a local stroke support group.)

I would love frontline GPs and A & E doctors to be better trained to spot early Brainstem stroke before it completely destroys yet another life, but as well as helping them to be less ignorant of the wide range of short & long term patient outcomes.

Furthermore, I want to conduct research with Joanna on the use of early intensive, repetitive, frequent Electrical Stimulation on upper limbs, of all types of stroke survivors who present physical arm impairment.

Yes, I want the world to see the impact of Fighting Strokes, so for that I make absolutely no apologies!

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Is your loved-one’s care home acting illegally? 10 tips.

I have recently been embroiled in a case which has concerned me so much that I write this blog in the hope it helps others.

In trying to tackle the care home management team, this information may be useful to you. With to the recent and distressing BBC Panorama under cover report of care in ‘care’ homes, this is actually quite topical.

In trying to tackle the often reluctant care home management team, this information may be useful to you too.

  • Firstly, clarify if the registered nursing home funds the bed with a combination of health & social care? If it’s not a care home with nursing care for the resident, it may only be a residential placement care home.
  • Establish if the patient meets the eligibility criteria for a NHS Continuous healthcare package, which is care arranged and funded solely by the NHS.
  • It is important to be aware of the difference between a ‘healthcare need’ as defined;

    ‘As those who people require some degree of nursing or twenty four hour nursing’, yet many relatives are told their loved-one merely has social care needs.

    Why you ask?

    Because it relinquishes the NHS from any responsibility for funding the persons care. The person will instead be means tested and told to pay for their care.

    We all thought healthcare and nursing care was free didn’t we?  To be clear in the NHS Continuing Healthcare guidelines it says,

    ‘A healthcare need is a need to the treatment, control or prevention of a disease, illness injury or disability and the care or aftercare of a person…’

    Whereas,

    ‘A social care need is focused on providing assistance with activities of daily living, maintaining independence, social interaction, enabling the individual to play a fuller part in society…. Eg. Social work services, advice, support, practical assistance, adaptations, assistance with equipment.’

    IT IS ILLEGAL TO TAKE ON RESPONSIBILITY FOR PROVIDING CARE TO SOMEONE WHO SHOULD BE RECEIVING CARE FROM THE NHS.

    3. Who is the visiting GP? He should visit and make referrals twice a week on behalf of the patient.

    4. Who is the qualified physiotherapist and must be Health and Care Professions Council (HPCP) registered in the UK? If the physiotherapist is not HCPC qualified in the care home, is the patient referred to a specialist stroke physiotherapist?

    5. Have you reviewed the Care Home’s last Quality Care Commission report? If they are failing to meet the guidelines the home can be closed down.

    6. Have referrals been made for all the patients’ unmet needs? Eg has a wheelchair, cushions, mattresses, mouth care, emotional needs etc been met? What about speech and communication needs? Is the patient currently in bed 24/7 without a wheelchair?

    7. Take video evidence of the care home on your phone or otherwise. Always, keep a diary, including dates, times, people, conversations, photographs etc.

    8. Please use Crowd funding sites or sites like GoFundMe and friends to help you fundraise for assistive communication and mobility technology. E.g eye gaze or eye tracking equipment.

    9. Go to the local papers and become a whistleblower, if your concerns are not being met.

    10. If all else fails approach your local MP.

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    Doctors are not God! 10 tips for doctors.

    So how do I know?

    My husband was told in the first few days after my own catastrophic brainstem stroke:

    ‘She’d be better off dead.’

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    Andrew Mars wife was told:

    ‘He will survive but he’ll be a vegetable for the rest of his life.’

    Andrew Woodgates’ wife was told:

    ‘If he survives this you’ll wish he hadn’t.’

    Far too often, I think doctors are overly negative/pessimistic and far to soon after any kind of stroke (or serious illness for that matter).

    I feel strongly that doctors remain honest but hopeful and must not dash all hope. I founded my charity – Fighting Strokes – (You can probably figure out why I called it that from the name!)

    After all, no traumatised loved-one is wants any false promises, just balanced information – research & anecdotal – that there may be real possibilities.

    Doctors are NOT GOD! No one has a crystal ball.  Can we really factor in the love and commitment of proactive loved-ones coupled with the spirit, will, self-belief, motivation of particular patients.

    I accept that the NHS has less and less money and resources to work with so there are enormous pressures on doctors and ICU units, but come on?

    So here is my little list of things doctors must read in cases of serious stroke.

    1. “All strokes are different. Fact. “You never lose a VOLUNTARY pathway if it returns!

    PLEASE TELL THE PEOPLE AFFECTED BY STROKE & THE PATIENT!

    2. “On a graph, we just don’t know where your loved-one will be. They could be like Kate Allatt, Richard Ford, Mark Ellis, who appear quite ‘normal’ considering after their period of locked-in syndrome.  However, there are people like Tony Nicklinson who represented a very severe case indeed, with every single permutations in-between. We just don’t know the long-term prognosis in the early weeks or months of diagnosis.”

    3. “Intensive and good therapy immediately after the coma and be patient-centered – psychological, emotional, neuro physiotherapy, Speech & language therapy (S.A.L.T), Electric Stimulation, PRACTICE..It’s about Repetition, Frequency & Intensity, as opposed to doing task related activities like getting dressed or making a bed.”

    4. In brainstem strokes with locked in syndrome, “you must have an ‘end of word’ box on the colour-coded communication board in ICU & Rehab and a TV & radio, which gets switched on/off.”

    5. “The word ‘plateau’ is GARBAGE!  It is a term used by medics to describe the way progress will slow to almost nothing, but that is really due to NHS funding and ignorance, rather than the patients’ own desire or ability to improve.”

    6. “Slow or fast, large or small, the patient will ALWAYS make progress improvements, following a stroke. If the patient must really want to work hard in therapy and alone. Please note, that progress does NOT come easily. I remind you of Christine Waddell, 17 years with locked in syndrome and actually making phenomenal progress. Fact. (Ill blog next time about her.)

    Loved-ones must not try to do too much for the patient. It frustrates the patient and you. This also impacts on patient progress. This is deeply irritating, even though your intentions are not often borne out of irritation, but a genuine desire to help.”

    7. The patient will feel, shock, pain, grief, boredom, sleeplessness, denial,  anger, isolation, depression and acceptance. That’s the loss cycle. In time the patient MUST really want to improve. You can lead a horse to water, but you cannot make them drink it! I’ve learnt that. Be patient and be tolerant.

    8. As Loved-Ones you MUST stand your ground with the medics and patient, be diplomatic, but forceful use video evidence, keep a diary. Don’t allow medics to accuse you of wanting your Loved-One back so much that you actually mis-see their small flicker or progress. Small flickers lead to big things! Proactive loved-ones are a key in the patients level of recovery. Video changes and keep a diary.

    9. Read: The Brain That Changes Itself, by Norman Doidge.  Research neuroplasticity and how the brain makes new pathways.

    10. The patient MUST really WANT THIS & we must stop pretending to be patient-centred in hospital and start applying the theory!

    This is worth bearing in mind:

    Optimism and hope are related to better outcomes and depression to premature death and worse functional recovery.