The elderly in particular

In the early 90's, after being made redundant and then going through the desperate and frustrating search for work, I realised that the only jobs that seemed available were in the care industry. So I ended up applying for a large number of jobs in nursing and residential care homes. Needless to say I applied for a large number as I continued to get refusals. But this gave me the opportunity to see the inside of a substantial number and variety of such places. That, and the search for a nursing home for my wife, meant I was paying a lot of attention to what they were really like and what they would be like to live or work in. My overall impression was that a disturbing number were mediocre to poor, some downright unpleasant, especially from the residents point of view.

Those perceptions are always, for me, going to be the background against which I judge any future encounter with such places. So, as my mother aged and her health became more of a concern, she kept on having little incidents that showed her underlying health was declining, I wondered what was ahead for her in terms of what her care needs might entail. She quite naturally had a robustly simple view of her future, to live at home until she became so seriously ill that she had to go into hospital. The hospital period she saw as a few days of nursing before inevitable death.That was what she wanted, that is what she expected, but it was not what she got. The gradual decline in health and ability is an inevitable consequence of the ageing process. There are a great variety of ways this decline affects people for a substantial number of well known reasons, so the consequences on support needs should be well understood and suitably catered for. Sadly this is often not the case and the story of my mother's last years illustrates this.

As I mentioned in an earlier post she had suffered a substantial number of serious health issues through the years, many cancer related. In the late 80's she had a cancer of the lymphatic system which she was not expected to survive. But she did after a massive dose of chemotherapy. After that her general health was substantially compromised. But she drove on in her own inimitable way determined to not let it get in the way of what she wanted to do or the way she wanted to live. She even managed to keep a largish unmodernised house going on her own after my father died in 2000. But in 2003 she realised this was not doing her any favours and she sold it, with great reluctance, and moved in to a retirement flat, she was 83 at the time. But time and the damage to her general health from all those years of serious illnesses were catching up with her, so the frequency of small illness "incidents" increased. These sometimes involved a brief visit to the local A&E department and, after one particularly frightening one, leaving her with some limitations, I persuaded mum to have someone come in as a part time carer. Basically what she needed was someone to help her wash and dress in the morning as the movement of her arms had become severely limited.

This was where my concerns over her substantially increased as not only did she only very reluctantly agree to this provision but the hospital should never have discharged her without first checking she was being discharged into a safe environment. This was a rule Social Services and the NHS had agreed national between themselves and had, I was told, been set up and was operating where my mother lived. Just on this occasion they did not comply with their own requirements. They even managed to discharge her with the wrong medication. When I complained, they apologised, said they would learn lessons, and it would not happen again. How often have we heard that same litany and how often have they seemingly not learnt lessons only to repeat the cause and effect over and over again? 

As a consequence of my complaint mum was visited by social services, assessed and it was agreed people would go in to her to carry out those tasks. This was for a free trail period of a month after which the service would have to be paid for by her. Mum found that month to be much more of a trial than we expected. They were due in to her between 7 and 9 in the morning but their arrival time was very erratic sometimes not turning up till much later, sometimes not at all. There was also no attempt to warn her of late or non attendance. So at the end of that trial period, when asked if we wanted to continue, we replied with a resounding no. The other aspect of that care was that the people visiting could be any one of about 2 dozen staff, which is not want the care receiver wants when care as intimate as being helped to wash and dress is involved. Instead we went to a local independent care agency who were able to provide specific care assistants to ensure the same person would always turn up at the same time to give that necessary level of confidence and care.

But what was missing from all of this was the vital ingredient of skilled professional medical oversight of her health issues. I will admit here that mum was her own worst enemy as she would much prefer to suffer in silence than seek timely help. She had also learnt to distrust her local GP as he tended to make decisions on her medications against the advice of her oncologist who she had learnt to have a deep trust in. The GP also seemed incapable of making home visits himself or getting district nurses to visit her when she was seriously ill and unable to get to the surgery.

The result of this was that she had a serious health condition develop gradually with no one realising the seriousness of what was happening. The employed carer was concerned and wanted mum to seek help, I tried to get her to a doctor, or a doctor to her, but no one came until it became a crisis and she was found so unwell early one morning by the carer that an ambulance was called. She was in hospital for about 3 weeks before the hospital talked of her being discharged. I asked to be involved in any decision to discharge her as I would need to get the carers going back in and needed to know what extra help she may need to support her. I also wanted to try and get a regular district nurse visit to her when back at home so that any emerging problems could be dealt with in a timely manner. The newly qualified young doctor who told me about her being discharged was the one I made these requests to. I was told in no uncertain terms that it was none of my business as the doctors were the professionals and I did not know what I was talking about.

Apart from being shocked and angered by such a rude and inappropriate response to what I thought were reasonable and responsible requests, I told them they had discharged her into an unsafe environment before and I was determined it would not happen again. Again I was told they were professionals and they knew what they were doing. I pointed out that my mother had put in place an Enduring Power of Attorney very specifically so that I could speak on her behalf in such situations. They chose to ignore that and discharged her anyway. Thankfully I had already contacted the care agency and they had their people on standby and be there when I accompanied her home. So again, this time with more vigour, I complained making it a formal written complaint. Again, they apologised, said they would learn lessons, and it would not happen again. They asked me sit in on a meeting to discuss the issues but I declined pointing out that the problems were obvious, and they should just get round to properly carrying out the procedures they had already established.

So mum was back where she wanted to be and with a compromise between her and me as to what level of care support she needed as against what she would accept. Not ideal but it was as good as I could get her to agree to. To me the vital missing ingredient was the lack of medical oversight. I went directly to the district nurses and was told that they only visit people with a specific nursing need such as dressing wounds. I warned that my mother was likely get into another crisis situation without such supervision and was told to contact her doctor when the crisis struck. I always though prevention was an important part of the health service provision, clearly not in those circumstances and despite proven risks.

Within months another serious problem arose in which she refused help with until she was in absolute agony with and again an ambulance was called. An ambulance had been called a month before when, during the night, neighbours heard her cry out in agony. On that occasion she refused to go to hospital or be properly checked over, she sent the ambulance away. This time she was admitted as an emergency as the growing problem had become critical. In hospital she continued to decline and was not expected to survive. She did, just, but as she said it ruined her 90th birthday, it occurring while she was in hospital on the brink. This time things had to be different as she was clearly not able to look after herself and had been left very frail. The specialist doctor told me that they were going to diagnose her as in need of palliative care, this means that they considered she was dying and just need care suitable to an imminent end of life. 

The next post will be the last in this story of my and my families health care experiences and will deal with, yet again, the complicated and fraught process of seeking a suitable nursing home.

From the inside

As the traumas of my wife's home care was beginning to be a thing of the past, and during the time I was seeking out that nursing home for her, the early 90's recession was diving into some dark places work-wise and I was made redundant. The construction industry, my bread and butter, was particularly hard hit and the firm I worked for shrank to an eighth of its former size. Nobody was wanting buildings designed, so no one wanted to employ out of work architects. 

For two years I applied for almost any and every job in the area and got endless refusals, but then I got a job as a care assistant at a unit operated by the local NHS Trust. It was part residential part respite care for young adults with severe mental and physical impairments. Why did I go for the job, because I needed an income and a working environment, why did I get it, because I persuaded them my experiences nursing my wife meant I had the basic skills needed for the job. So here I was on the inside of the official care system, almost by accident, back in a familiar situation of nursing highly dependant people, but this time with the chance to see a much broader spectrum of issues. 

As I got used to the routines and individual needs of the people I was helping care for the dedication, skill and empathy of nearly all staff was constantly demonstrated for those in their care. I learnt of the variety of disabilities those we cared for exhibited and how to best address their needs. I also saw what a hidden world it was and how people on the outside knew so little about that world and those being cared for.

There was also the chance to see the other side of the relationship between those being cared for and their families. Something I had seen with my first wife's brother and his family. It was much more complex, variable and fraught with volatile stresses than I could ever have imagined. Within that there were excellent, ordinary or downright exploitive and/or abusive relationships. This was minimal where the resident was only infrequently visited by their family, but where the person came in for respite care those experiences were very in your face. Some families gave their all for the severely disabled child, others used them as a money train and treated them as though they were in a Victorian asylum but inside the family home. One family used to tie their child with a lead to a washing line in the garden so the child could walk up and down, and keep them in old and unsuitable cloths despite the benefits that got for the child. One father said he kept a baseball bat by his chair to threaten his severely disabled and disruptive son and keep him at bay. Every so often there were accusations and counter accusations about who had been responsible for bruising, loss of clothing, who had said what about who in terms of arrangements, even the emotional shock waves from unrelated disputes and marital conflicts within families playing out when family members came to visit the person we were looking after.

This threw a disturbing light on some of the nursing and care homes I had been visiting to find a suitable place for my wife and later to find a carers job for myself. Some nursing and residential care homes seemed dreadfully depressing and incompetant waiting rooms for death. Others were vibrant communities, others like poorly run B&B's smelling of cabbage and disinfectant. 

While I was doing this job my wife died. It was a long and unpleasant last episode to her life and the end was a welcome relief to her and her family, and all of those who had known her in the fullness of her life. She had spent the last few years not knowing who anyone was and most likely not knowning who she was or had been. She seemed just a body with basic functions persisting with no conciousness of the world around her. What I had seen of the excellent care she received seemed in great contrast to the quality of life she had been left with. It was one of the inevitable internal infections that eventually overcame the bodies natural defences and ended what had become a very sad and meaningless remnant of life. She had hated what could become of her and I was so glad that her perceptions early on had been damaged so that she never seemed to realise what was happening to her.                  

No escape from the emotional price paid

In my last post I described the nature of the health issues my wife was challenged with and the way we tried to deal with the consequences to support her. From that I hope you got a bit of a feel of what it was like for our very young daughter and I to experience and cope with. Those 10 months when my wife was nursed at home, in a quasi nursing home style, were a tremendous challenge for both my daughter and I to live with as the house felt nothing like our home. There seemed to be no privacy or private life, and on occasion when I returned to the house from work, shopping or collecting my daughter from nursery, I was challenged by newly arrived nurses or care staff as to who I was and what I was doing there. 

Sadly, as my wife's condition continued to slowly decline despite all the care and support she received, I realised I had to substantially up the level of support she received. The problem was that the care was supporting her but was not and could not tackle the root cause, MS, the disease was essentially eating away at her nervous system and destroying her already badly compromised capabilities.  It was clear that she was in need of more specialised care to deal with her declining abilities and guard against and deal with consequential risks from infections, sores, lack of body tone, ability to maintain healthy body posture, etc. In other words she needed round the clock skilled care to be on hand for the inevitable crises that would spring from the risks outlined above. That meant qualified nurses specifically skilled in dealing with such diseases in highly dependant people. Apart from the complexity and cost of setting up such a care system in our house I was horrified that it would mean that I, but especially my daughter, would be living in a place where her needs came a very poor and distant second to my wife's. 

By this stage my daughter was nearly five and after some guilt ridden considerations I decided we had to call a halt to my wife's care at home. By this time my wife's ability to understand what was going on, think about the pros and cons of any question, and hence make any carefully considered decisions had passed. Never the less, and although by then I had obtained Power of Attorney to deal with her financial and legal needs, I explained, I hope clearly, to her what the situation was, what I was thinking of doing on her behalf and why and asked her if she agreed. She indicated that she agreed/accepted that decision, but did not seem to show any response that I could say demonstrated whether she thought the decision was good, bad or indifferent to her. The realization of this seeming disconnect of hers with what had and was happening to her was one of the most startling, humbling and depressing reactions I had to it all, as I knew so well how much she had hated the potential of what was now happening to her with absolutely no hope of escape. 

So I talked to the family doctor, the neurologist and Social Services and it was agreed she would be admitted to hospital while a suitable nursing home was found. It needed to be one that understood the needs of the person in relation to the sort of disease, and be able to cope with someone already highly dependant and going to get more so. I was surprised to find that such places are very few and far between also that the ways of gaining admission, and the idiosyncrasies of waiting list procedures and qualification criteria, meant that it was nearly a year before a vacant bed in the right sort of place at the right time became available and known to us. During that time I found that despite all the complexities of understanding the needs of my wife and the skill needed to match that to the potential nursing home, I was the only one who was permitted to handle that. It was solely my responsibility, as Social Services and the NHS staff were not allowed to express opinions. A daunting and truly challenging responsibility. 

The potential resident had also to go through a detailed selection and assessment period in the nursing home providing that they had passed an initial check as meeting the basic criteria. This happened three times; one where she stayed for a week but was deemed not to fit in; another when by the time she had been there the trial week and they had accepted she was suitable, the vacancy had gone; but finally fully, successfully and thankfully in an ideal nursing home specialising in people with severe neurological disorders. Sadly it was some 50 miles away thus making frequent visiting difficult. But even then bureaucratic difficulties got in the way because there were two ambulance services involved and I was told they were not allowed to go into each others territories and she would have to be transferred between ambulances part way through the journey. We managed to shame them into ignoring that rule.    

Of course there was the issue of money, the cost of my wife's stay in the nursing home was going to be substantial and certainly more than we could afford despite money from her benefits, income from her savings, and her health insurance. Remember I said that the chance accident, meeting and granting of back dated health insurance was going to play a substantial part later on. The money equation would just have been impossible to balance without that substantial contribution. Eventually an arrangement was arrived at whereby the NHS and Social Services agreed to add some top-up monies to the pot. They were pragmatically required to do that to move her on from the hospitals responsibility. I of course had to sign over to the nursing home all the benefits and their control. I did need to go a tribunal to get a judgement to stop the authorities counting all my income and savings as my wife's monies. Clearly I and my daughter needed money to live on and the tribunal upheld my decision to divide our joint savings exactly in half at the date my wife left the house at the end of the home care period. In another way it just reinforced the realities of the effective end of our marriage, its intellectual, companionship and financial interdependency. She was still formally and legally my wife but now her care and world was entirely in the hands and control of others and I was just a visitor. 

Despite this I did still have one truly intimidating responsibility for her the decision of life or death, in other words each time there was a crisis, like life threatening infections, I was asked whether it should be treated or not, but that is a different story.

Care in the community 80's style

It is important to point out that the 80's saw the development of the "Care in the Community" concept and the early realities of its introduction and implementation. So what follows needs to be seen in that light as what has happened since then has moved the realities on substantially though not necessarily always for the good. 

During all the time of the three attacks, her hospitalization, and when she was to be cared for at home I had to balance her needs, and our daughters needs with my ability to hold down a job to provide us with a continuing 'heads above the water' income. During this period the organization my wife worked for was privatised and the new company tried to cut back on their contract and legal responsibilities to her. I found I needed to remind them of what their legal obligations were and eventually threaten them with a restraining order when they tried to bully her by surprise visits while she was ill at home and I was at work. We eventually managed to get through to an agreement that meant she was retired through ill health. Clearly a sensible decision given her health conditions and inability to return to work, but it had to be fought for and was important as it had vital implications for the financing of her continuing care needs. From the realization that the first attack had meant that for some time she could do little in the house or look after all our daughter's needs, we had some help from Social Services to clean the house, make sure my wife had lunch and get our daughter to and from her nursery placement. We also had the benefit of our daughter being able to go to a specialist "support for families in crisis" nursery. It all worked reasonably well until that third attack. Thankfully I had a very supportive employer who kept me on full pay although during and after the third attack, I could only get in about 50% of normal hours on average, and even then my attendance varied greatly day to day depending on the unfolding crises and the things I needed to do to keep our family world working. 

So, when my wife was building up to be able to return home, I had discussions with the neurologist about my wife's clinical condition, what her needs would be as well as talking to the occupational therapist about what could be done to adapt the house to suit those needs. The neurologist, although very supportive, did ask me if I was sure I knew what I was taking on and wondered if I would be able to cope but, seeing I was determined to try, helped greatly by offering advice and setting up meetings with the relevant Social Services and NHS care agencies as well as taking my side in getting them to confirm what they could and could not offer. It was all predicated on the basis of me seeking out and employing a live-in carer who would look after my wife the 12 daytime hours of the day and my daughter when at home, all this for the 5 working days of the week. I was the carer for the other 12 hours of each weekday and all of the weekend. From the other official agencies we received the following. 1. A morning visit from the district nurses 7 days a week to help with getting my wife up, washed and dressed with any health issues monitored and dealt with. 2. An evening visit from the 'twilight' nurses 7 days a week, who got my wife ready for and into bed, again dealing with any health issues. 3. One hour's respite care once a week at the weekend so that I and my daughter could spend that time going out together while my wife was monitored etc. 4. A weeks respite care once a year, though I managed to get three sessions over a period of 10 months, where my wife would go into a local NHS community hospital to be cared for while my daughter and I got away and escaped all issues and stress to do with the caring process. While this planning and organisation was being carried out I had the house adaptations done with the help of a grant from occupational health. This included creating a new toilet and shower room downstairs, knocking a doorway through to the adjacent dining room, which was turned into a bedroom and nursing area. Then there were the loans of equipment, such as a ceiling mounted hoist, specialist bed and air mattress and all the other items necessary for the use of me and the other carers to enable us to give my wife an adequate level care and assistance suited to her disabilities.

Just when she was due home one of the providers had to temporally withdraw their offer, and as they were crucial to the effectiveness of the care each and every day, the return date had to be postponed by several months. By then I had already employed the live in carer and, as that process was very difficult in terms of finding the right person for the job prepared to work the necessary hours with the necessary skills, I kept her on. Until my wife was able to return home the carer went into the hospital to be with her and help them attend to her needs and therapies. It was for example important to give my wife regular and specific exercises and massages to ensure that her limbs did not seize up and try to improve her limited abilities. 

But return home she did and for ten months it kind of worked, though that inexorable and gradual decline meant that her abilities and condition continued to be lost. It was very difficult to experience that happen despite the efforts of so many trying to hold it back. It was an extraordinary time for my daughter and I, both witnessing this, dealing with the strange experience of living in a quasi nursing home that was also meant to be our home, and trying to explain to the larger family and friends what was going on and what it meant. 

As I said at the start of this post this was the 1980's, late 1980's, when Care in the Community was one of the hot political topics. I obviously got deeply involved in fighting my wife's corner while getting it set up for her. As part of that I brushed up against the campaign seeking adequate funding for the schemes. There was a general feeling that it was not affordable on the declared budget expectations so I decided to try and quantify how much the help I was getting cost. At the risk of being pedantic I will list what is not included in the cost as well as what is. What is included in the cost is: the wages of the live-in carer, the cost to the NHS of the district and twilight nurses daily visits, about an hours visit by two people on each occasion, as well as the three week long respite care stays, and that is all. Perversely the costs of the respite care stays were the lowest cost elements by some way. It does not include the costs of the loan of the equipment, the adaptations to the house, the cost of food etc for the live-in carer, any share of the cost of running the house as a quasi nursing home, or the value of my time as a carer. The annual cost, that I managed determine from nationally published information sources, of those very limited elements of the overall costs was £30,000. An enormous and unsustainable amount when you realise that this was the late 1980's.

A future promised then taken away

Remember that from that diagnosis 15 years ago my wife had refused to talk about having MS or even acknowledge that it may have serious consequences for her. Whatever she experienced, felt or thought about her situation she did not tell me. But I knew she could not really hide the fact there was evidence of the threat. Since that initial attack she had little sensation of touch around her midriff, she may have experienced other tell tale signs but I was not aware of any others that I could reliably attribute to the presence of MS. I knew just as much as she did that it was in there and a serious threat. She did not talk about it with her parents or friends and apparently only briefly acknowledged it with the family doctor. Towards the end of my time at British Rail we had the chance to live and work abroad for a period and be fully supported by the organization but she refused to consider it in case she had an attack. This was the only time during those quiet years when she seem motivated to bring the subject up.

So when my wife said she wanted to start a family it suddenly had to became an unavoidable item of concern. This was in the mid 80's and one of the first questions we needed to ask was, will there be any issues/complications/dangers from her having a dormant form of MS. When we went to the family doctor about any risks to her, the pregnancy, the baby, it was a sea change in her behaviour. The doctor assured her that there were no known risks on any of those topics and so, when she became pregnant, the pregnancy went well as did the birth, and a lovely healthy baby was born in early 1986.

As one small but ultimately important aside there was an incident during her pregnancy that speaks loudly of the randomness of fate and health/life insurance. She had tripped and fallen outside on the pavement near her office, one lunchtime while still working. She worked for a quasi government agency and as such should have been provided with extensive health and life insurance by her employer. But, because of the diagnosis of MS such insurance was refused her. When she fell she was helped to her feet by a man who it turned out not only worked for the same organization but also was responsible for staff insurance provision. So he told her if there was anything that needed to be done, in terms of her fall and the pregnancy, the company health insurance would cover it. When she told him the insurance had been refused her he was shocked. She explained the reasons, he was again shocked and said the decision was wrong, promised to sort it out, did, and she was subsequently granted back dated cover. It was to turn out to be a very financially important decision for her.

Just over two years later my wife had the first of three MS active attacks. The first and second, some six months later, lasted a day or two and left her unable to use her legs for some weeks. After that it took months as she gradually got back her stamina and standing/walking skills. The second and third attacks happened just as she was feeling she would be able to contemplate going back to work. You can see from that how violent the effect of an MS attack was for her by the loss of ability over such a short time and how long it took to recover those abilities, especially the stamina needed to be active for a normal working day. But the third attack just went on and on and within a matter of days I contacted the family doctor who contacted the local neurologist who got her hospitalised. Over the following weeks her condition continued to decline to the point where she was unable to do anything for herself and appeared to be in a coma like state. At one point she was not expected to live more than a few more hours. Then, just as unexpectedly as it started, the attack stopped and the agonisingly slow process of her body trying to recover started to show itself. 

Some five months later it was possible to think that she would recover enough to be discharged, still terribly disabled, but stable enough to be cared for at home. And so she went to a rehabilitation unit to try and maximise her skills. At this stage she could barely speak, eat, let alone wash, dress or do much at all for herself, so the rehab stay was meant to establish and build those skills. By the time she came home her speech was understandable although weak and laboured at times, she could feed herself easy foods with difficulty, but could not care for herself to any degree in terms of washing, dressing, toileting, and was effectively paralysed from the waist down, with limited control/strength in her arms and unable to sit without support to her upper body, so was confined to a wheelchair. She would clearly need 24 hour care for the rest of her life. We did hope that being at home would encourage further slow improvements in skills such as her speech and feeding herself, as well as give her a better living environment, so I started the task of organising that. For me it was a no-brainer to want her back home, especially in respect to my wife's welfare, our daughter and the relationship between them. Sadly even that limited expectation was to be thwarted as she had some sort of fit while in the rehab unit and from that moment on improvements ceased and slow and inexorable decline set in. Still I was determined to get her home for as long as it was feasible. This was where the concept of care in the community became a very 'in your face' experience.

Getting closer

In 1970, when I first met the girl who was to become my wife she was at university coming towards the end of her time there and so approaching the inevitable exams, a stressful time for her. As the exam time was upon her she had some problems with her sight and balance and was briefly hospitalized. Despite that she took her exams, got her degree and returned to live in London with a job as a research assistant. We married shortly after but as we started our life together the doctors continued to try at get to the bottom of what had caused those sight and balance problems. There appeared to have been no lasting effects and she said she felt fine. I was to learn that this was what she wanted me to hear and her to believe. But of course during the investigations and consultations suggestions as to what might have happened surfaced. The one that eventually was confirmed, in a emotional consultation with a senior consultant at a senior London hospital, was MS. It horrified and intimidated my wife because of all the stories of how it could affect her, its random nature, and the lack of any idea of when or how it will go into attack mode. She hated the situation and its implicit threat to her future so much that it was a banned topic and was only to be something we would talk about as an when it became active. She would cross roads to avoid adverts for the MS Society, refuse to watch or listen to any programmes about the disease, it was a very big elephant in the room that we all tiptoed around and pretended to ignore. This went on for 15 years until circumstances forced her to talk to me and others about what it meant for the other decisions we were taking. I still have no idea what she thought about it, and to what extent it lurked in her thoughts and actions through all those 'quiet' years. She would not even talk of it in hindsight, just in the moment when its treat could not be ignored. 

For most of the first 10 years of our marriage I worked in the Architects department of British Rail, that is relevant to this tale as I ended up in their R&D group and pushed myself forward to be responsible for investigating the needs of disability groups using the railways and formulating accessibility design guides for the architects departments. I eventually left because the Chief Architect refused to implement my proposals or do anything to achieve or improve accessibility into BR buildings and stations until regulations would force his hand. The fact that such changes would help the general non disabled public get into stations with luggage, children, etc cut no ice with him. But the point of this part of my tale is that I needed to find out what might be ahead for my wife, and what I might need to come to terms with and deal with. In doing the research I met a lot of disabled people, their support groups, campaigning bodies, and charismatic flag bearers. It was a humbling, extraordinary, fascinating and very educative progress for me from curiosity and ignorance to understanding and action. These were exciting times for disability groups as eventually their voices were being heard in important places and game changing legislation was being formulated and enacted. I once met Alf Morris, the MP who almost single handedly bullied the legislation through parliament. When I was introduced to him he turned to the person introducing me and asked “Is he on our side or theirs?” That reaction gives a bit of a flavour to how difficult many thought getting the changes through and accepted would be. My interest in the topic, the disabilities, the people, the ways of making the built environment more accessible was fired by my concerns as to what my wife and I may face as and when the disease took its toll of her. It may not have helped in that expectation directly but it did prepare me for the realities of serious ill health to come.Today we take for granted the accessibility and visibility of disabled people in the community, but back then they were very much the hidden and ignored part of the population. Before that period of educational experiences I was as ignorant as the rest of the general population on disability issues, the types and extent of disabilities, as well as the difficulties they faced. 

All the time at the back of my mind, and almost hidden from my conscious thoughts, was the lessons on health and risk I had imbued from my mother. She had suffered from a variety of serious health problems through most of her adult life, many cancer related and some barely survivable. She had a long string of serious operations and I think it was twice she had operations she barely survived when I was a child. I would stay with an uncle and aunt while she was in hospital and convalescent home and twice I was taken back home to stand by her bed with other members of the family as it was thought she might not last the night. I did not know that was the reason at the time, that knowledge was deliberately withheld from me. She did survive and I was kept in the dark by mum and dad about what was going on, until much later in my life. Despite the seriousness of her situation in those black days I did not understand that and was supremely innocent in my childhood of the dramas she was living. Again they were very different times and mum was never one to let on about her health issues or indeed anything much else, even what she thought of the things that were important to her. 

So that hidden medical history of my mothers, that I only really understood after I was married, further drove my curiosity about how a person's health and diseases, with consequent limitations, affected their lives. That and the threat of MS to my wife drove me to be curious about the impact the disease could have on her, world around us and how it did or did not cope with such issues. As an architect I wanted to make the built environment inclusive to those with disabilities and limitations. I was also fascinated by what people could achieve despite some hugely limiting disabilities.

First experiences

This blog is all about my experiences and thoughts on the heath care system in this country. Through the years I have had a wide and very variable set of experiences of the way health care, for the elderly, seriously ill and disabled is delivered and, despite all the changes and initiatives through those years, have found the way the care has been delivered to be disturbingly variable and idiosyncratic in its effectiveness. 

I suppose I first came across the disturbing side of health care when I visited, in my early teens and with my parents, an elderly neighbour who had needed to go into a nursing home. She and her family were affluent and so costs were not a limitation, the place was a grand looking house somewhere near Marlow, and we drove down in her family's grand old car, a stately Rolls Royce. So imagine the shock of seeing her in what appeared to be a crowded and hastily arranged dormitory with no privacy for her and, as far as I can remember, no furniture or area to call her own or keep her things. It was a long time ago and so my memories of it are limited, but I remember that my parents were shocked and I felt as though I had entered a very different world from the one I was used to.

Next was a similar but scarier experience when visiting the grandmother of a girlfriend when the old lady had had a fall and been temporally admitted to a geriatric ward in a London mental hospital, apparently the only place that could be found for her at short notice by her local hospital. Entering the grounds we skirted a building that looked like an old workhouse, and probably was, with bars at the windows, people faces pressed to the windows, waving and shouting from open windows. The building the grandmother was in looked like a large converted wartime timber framed barrack block and was populated by a lot of elderly people in all states of health and mental capacity wandering around. The grandmother looked frightened and her daughter quickly got her moved to somewhere calmer quieter and more acceptable, though it was not an easy task.

And finally, for this post and part of my story, is the experience of visiting my first wife's brother in various nursing homes/institutions specifically set up to care for children who were severely physically disabled and mentally challenged. Here we are talking about the early 70's and the places were disturbing and scary and felt like some updated version of a Victorian world that Dickens would have torn into. There were high metal fences around them, a fair amount of chaos and intimidation in and between the residents, and it felt like visiting some particularly institutionalised form of hell. For him, he was in his late teens when I first met him, better things were to come, but his severe cerebral palsy had condemned him to a lifetime thus far in such places.

All of these places and what they were like was well hidden away from view and I would have known nothing about their existence or what they were like if fate had not taken me to them. As you might imagine such experiences made some big impressions on me and gave me a back stop to make judgements against, as to what was right or wrong with the provision and my attitude to care for the vulnerable. Those places and images live with me still and were far worse than I have the words to describe.