Locked-In without a Key

There seems to be a surge of realisation, I think as a result of positive spectacles like the Paralympics, that from disability caused by trauma post birth (such as Strokes, oxygen starvation post heart attack & head injuries for example) perspective, people do NOT plateau re their recovery, although the NHS would have you think the opposite. What seems to happen is the NHS disengages and effectively abandons the individual and their families, stating this myth that people after 12 months won’t make further gains.

It appears to me, and to many others that have worked in the rehabilitation field, that once one is physically stable and relocated to their home, often in the loving but untrained hands of their family, rehabilitation from the NHS dries to a trickle and then stops. This is possible due to Consultants, that are needed to guide the multitude rehabilitation & care services for the ‘patient’ and their family, drop the patient from their ‘lists’ or at best see people yearly. This leaves family GP’s (General Practitioners) being expected to cope with issues that are in reality extremely specialist areas, hence needing a Consultant who specialised for years in one area of medicine.

These specialist areas often include (when thinking of Locked-In Syndrome as an example) a myriad rehabilitative focussed medical & therapy services, but without a Consultant coordinating the activities of Physiotherapists, Occupational Therapists, Speech & Language Therapists, Dietician, Incontinence Advisors, Skin Integrity Nurses, Pain Management regimes, Gastric & Renal issues, respiratory problems, muscle wastage, skeletal fragility, and the list goes on, they all disappear, they all abandone the family and the individual. There is no way a GP has time to coordinate specialist areas and such services that they are not even specialists in, hence the name ‘General’ Practitioners.

So this becomes a self-fulfilling prophecy, yes people do plateau and stop making gains after about a year, as everyone who could help them move forward drops away, and therefore plateauing, even deterioration, is a real occurrence, but it does not need to happen in many, many cases. This plateau is because money is diverted elsewhere by the NHS, rather than continue to support people at home where the gains may be slower, diverted to where the outcomes come in greater numbers and are not measured in health terms but measured in how quickly one is seen, or how quickly one can discharge a patient, how quickly one can reduce one’s list of patients and get another in; measures that focus on volume not on quality, certainly never quality of life, and it is such a false economy. Rarely do these Consultants and Therapists see people through the years of pain, struggle and endurance to see what their long term maximum gains are, to achieve their maximum quality of life, and quality of life for their families too.

The evidence I would put forward that this is a monetary driven plateau the medics use in order to turn their backs on people after a relatively short period of time, is that people who have, or can raise, their own money can continue the rehabilitation privately, often sourced from the very therapists working for the NHS that have turned their backs on patients, and as a result their gains continue to be made, and they achieve greater recovery overall, including improved mental health levels for them and their families. Locked-In Syndrome has been brought sharply into focus by the events surrounding Tony Nicholinson (who died recently, may he and his family find peace now), but we are seeing a surge of positive messages relating to the state called Locked-In Syndrome and it is these I think we should focus on in this particular blog.

One of the biggest factors in my opinion is the mental health element of recovery, one that is often overlooked by medics as it doesn’t fit in with the Medical Model as such, but it is this state of mind that drives someone not to give up or drives them to give up. Traumatic injuries and strokes that leave people with such significant and multifaceted physical impairments, also propel people instantly into a swirling vortex of emotions, as they come to terms with instant loss of movement, speech, sight, even status and employment, and the families go on this mental journey with them, as Mother or Father become the people needing care, or lovers instantly change roles to become carers. As with the individual, the family, the loved ones, haven’t had any notice either, haven’t had any choice, haven’t had any time to adjust, it usually happens as instantly as the head injury, car accident or heart attack that causes is.

But again the NHS is somewhat lacking in this support, one can be referred to what they call ‘Psychological’ Services, but if you can’t communicate or participate in ‘talking therapies’, then Cognitive Behavioural Therapy & Counselling become irrelevant, and their interest and effectiveness can be as muted as the “patient’s” voice and ability to express themselves. There is evidence Psychological Services are of use to families but often they focus on adjusting to loss, adjusting to and on many levels accepting disability in your lives, and this again dampens expectations of progress still to be gained, reduces drive to see positive change. Is it right to give people hope of progress, well if you talk to Kate Allatt of Fighting Strokes, who recovered from Locked-In Syndrome, or Christine Waddell who is recovering from this syndrome (both had strokes that caused the condition), then the answer would be a very loud, resounding and enthusiastic yes.

Surely it is better to be supported, motivated, encouraged and almost pushed to try and make gains, as the alternative is to give up and wait for pneumonia (a common cause of death in significantly disabled people) to claim the person. Kate Allatt reports taking 4 years to recover but it was her state of not giving up that was key and there is additional benefits too. If one continues with the rehabilitation, keeping the therapists coming in and working with individuals and their families from a perspective of not giving up, then many will make significant gains and therefore need less care, less rehabilitation, and this saves money for decades to come. This is actually a far better financial model as people need less care for the rest of their lives, saving the tax payer 10’s of thousands of pounds on every person making gains. Kate went from needing 24hr a day care to now being as independent as anyone else who has not been through this journey, but if she had not of fought, she would have continued to cost the state anywhere from £500 to a £1,000 a week for the rest of her life.

Now Kate, as do many of us, campaign to drop this medical urban myth that people plateau after a year, in reality it is the NHS that can’t be bothered after a year and give up on the patient and their loved ones, leaving individuals to fight a long hard battle back from the brink of total infirmity and near insanity. Stop using this plateau nonsense as an excuse for short term monetary gains, when far greater savings could be made by investing in people and supporting them down a very scary long road of recovery, surely we owe our neighbours, or fellow members of society this much.

Think of the person most important to you in your lives, the person you love the most, would you want them abandoned by the very people who are employed only to deliver a service to them?

(Please support Kate Allitt, she and her organisation make a real and needed difference to scared, vulnerable people & families: http://www.fightingstrokes.org)