Ladymoor Gate Farm BLOG

When my first husband died, aged 46, I was initially told that I was entitled to a widow’s pension for myself and my children. My husband had paid national insurance contributions and would not now be claiming his pension. It seemed fair. My husband would have been pleased that his contributions were being used for the benefit of his children.

But not so fast. We had nursed my husband at home until he died. I could not have managed alone, but I had the help of a new partner.  My new partner did not work. He had been my husband’s full time carer while I continued to work (the family still needed money). He was better at it than I was. I got too upset and distressed. The new partner meant I could not claim the widow’s pension. I could see some fairness in this, but what really annoyed and upset me was that it also meant my children were deprived of their share too. I was told by the person processing my claim they were now the responsibility of my new partner. If I was short of money (fortunately I wasn’t) I could put in a claim for means tested benefits.

This week many politicians have been blaming absent fathers for the ills of society. Absent fathers who fail to provide financial support to their children, say some, should be compelled to pay up.  As it is those who do provide support must continue to do so even if their ex-spouse remarries. Why the discrepancy?  Why should the new partner of a widow be financially responsible for his predecessor’s children, but not the new partner of a divorcee?

If a deceased father has made the appropriate contributions to the state pension why should the state be allowed to withhold payments due to his young children just because his widow finds another partner?  Are bereaved children less worthy or less needy than those whose parents have separated? The amount of the pension would not have supported my children, not by a very, very long way and I was fortunate enough not to need it. But the same cannot be said of all widows. The state is applying double standards. Money, not children, is its main priority.

I spend a lot of time researching my family tree, or rather my children’s family tree - just to double the challenge. Not one branch but all of them. For some I’ve gone back about 12 generations, others only three or four. (See my family tree database). I must admit it is not all my own work - I’ve swapped information with plenty of other people, but I always try to re-research it for myself.

I started doing this is 1997 and stopped in about 2001 - now I have started again - not because of any TV program, but because of the return of adequate free time and sheer curiosity. I just want to know who the generation before was - what they were called, where they lived, what they did…..it becomes addictive; the challenge…just one more and then maybe I’ll stop. But no, if one branch dries up there are others to persue… and round and round the branches I go … the next search will definitely reveal all …. and occassionally it does.

When I first started genealogical research the thing I noticed first was the death. It was disturbing trying to get to know someone who had lived many years before and then finding a grave stone that bore the names of all their children; died before them in infancy. It was too sad to contemplate. The thought of losing a child was the most painful thing I could imagine and despite the much higher rate of infant mortality in previous centuries, I doubt it made it easier for the parents and siblings. It haunted me and during my first spree into genealogy I think I subconsciously avoided death dates. I didn’t want to think about anyone dying early deaths, leaving loved ones behind with huge gaps in family life. If they disappeared from the record I might suspect they had died, but I never checked - there was always just that possibilty that my poor research missed them. I could therefore pretend (although I knew it not to be true) that everyone shuffled up the generations from birth to great grand parenthood and then quietly faded out at a ripe old age.

But now into my second spree it’s different. My husband died aged 46 after a long and debilitating illness. My younger daughter was 8 and the older one 12. We didn’t have any financial problems and we had known for several years that he was terminally ill, but the impact of his loss was still a shock. No amount of advance warning could prevent to chasm his loss left in our family. The early death I had hidden from in my genealogy was unavoidable. I wan’t researching it, I was living through it, suffering from it and surviving it. Maybe in 100 years time someone will be digging around in births, marriages and deaths, checking old census returns and discover this “fact” in our lives. What will they think? Will they feel a twinge of sympathy?

Now I am trying to find out about the deaths of my ancestors. It isn’t adding to my list of names or uncovering just that next one back in line, but I need to do it. The early death of a close family member is a life changing and significant event. It has an important influence on the future lives of the survivors. If I want to know about the lives of my ancestors, I need to know about their deaths, about the way they survived after suffering tragic bereavement and what they went on to achieve. It makes them into real people, not immortal fictional characters who just happened to donate a few genes to me.

I looked up the death record of my own husband. I stared at it. Maybe just words on the screen to everyone else but a whole life and experience to me.

The recent incident in which two brothers were arrested (and now released) after an early moring raid on their house interested me. Not only because it was a terrorist story which from the outset didn’t feel quite right but because the police had acted as a result of intelligence and surveillance.

25 years ago I was caught up on the edge of a terrorist incident in which the boyfriend of my housemate was arrested as an IRA terrorist suspect. Surveillance was a big part of that story too and while I personally wouldn’t have been surprised if the trading standards people had taken interest in some of the activities that were being observed, “boyfriend” was definitely not involved in terrorism.

An acquiantance of “boyfriend” was a second hand car dealer and he had a number of cars to sell but was off for an extended holiday. He asked “boyfriend” to mind his business for him and offered him a good share of the profits if he could sell any of the cars. For a while the cars were parked on the road or in pub car parks near our house, but because some didn’t have valid tax discs they came to the attention of the police. “Boyfriend” needed to move the cars that were parked on the road. He decided to offer them on “trial” to prospective purchasers. A friend of a friend of a friend said he know someone who was interested and a car was duly delivered. The prospective customer had the car for about six weeks during which time “boyfriend” visited him several times. It turns out that during this time the prospective customer was under surveillance as a suspected gun runner for the IRA. Anyway, the car was eventually returned to “boyfriend” but almost immediately it was followed by an offer to buy it - from the very same prospective customer. “Boyfriend” took the car back to conclude the deal and while he was there the place was raided and he was arrested and detained under the then anti terrorist legislation.

“Boyfriend” was wary of the police. I doubt whether he had done anything more serious than dabble in the second hand car market and allow the niaive to believe he was a private seller, not a particularly honourable activity, but very far removed from terrorism. Nevertheless he decided “not to co-operate” and as the car was central to the surveillance evidence he was implicated and detained.

For two days my housemate didn’t know what had happened to her boyfriend. On the second evening we had a visit from an excitable Irishman. He was the friend of a friend who had needed a car. He told us that “boyfriend” was a guest of Her Majesty and that we mustn’t use the telephone because it would be tapped. He told us not to worry because he had more friends who would sort it and get him out and safely to Ireland where he could hide. The Irishman wouldn’t answer any of our questions and then he left. Needless to say we were seriously worried and had no idea what to do. Should we contact the police? What would we say?

The next day a very senior police man arrived with a companion. He asked if we knew “boyfriend” and whether he could come in. He explained to us what had happened. Because “boyfriend” hadn’t co-operated it had taken them a while to find out where he had been living. The police searched the house. We told them about the cars and the Irishman and then they left. “Boyfriend” was released. He didn’t seem particularly please we had explained about him minding the cars and the colleague who had put them in his care was even less pleased when he returned from holiday. I don’t think he ever went to the police to retrieve the car that had been at the centre of the surveilance.

The police clearly believed my housemate and me and they didn’t find anything in our house (although they didn’t search for days as in the recent case). I presume that our account of the unusual car dealing matched with the surveillance observations of the comings and going of the vehicle. Maybe we just came across as honest. I don’t think they could work out where “boyfriend” fitted into the picture and were annoyed he wouldn’t co-operate. Maybe he had wasted a lot of their time. I don’t know. But I sometimes wonder if the story would have had the same ending if “boyfriend” had been Irish or if either my housemate or I had  been Irish or if there had been an actual incident and the police were under severe pressure to get a conviction. After all this was only a few years after the Guildford 4 and the Birmingham 6.

Since the Birmingham 6, new rules have been introduced to prevent miscarriages of justice but many commentators and politicians today argue against them, saying they should be relaxed for suspected terrorists. Are they, as they appear to be, assumming that those arrested are guilty and there is something wrong with the system if they are not convicted. Our system requires guilt to be proven. It has to be that way as it is almost impossible to prove a negative. The danger now is that too many people assume that those suspected and released or acquited have got away with it because the evidence wasn’t found. But no evidence will be found in the case of the innocent and innocent people can get caught up on the wrong side of surveillance, as did “boyfriend”. In the new climate of fear will they therefore be forever under suspiscion?

A few decades ago the joke about justice was that an accused person was innocent until proved Irish. For Irish, now read “bullied parent”. The current child protection procedures and the proposed laws to penalise parents for their childrens’ bad behaviour provide a charter for child bullies. They can be as anti social as they like and their parents will be punished - not them. It is a power too far.

Of course the typical teenager would not use such a power againt its parents - but then the typical teenager is unlikely to be bunking off schools or indulging in anti social behaviour on the street. The mistake is to assume that parents of anti-social, excluded or truanting teenagers either condone or ignore their child’s behaviour and do nothing to try to stop it.  Undoubtedly some parents do not care but there are, I believe, a great many who have taught their children community values, provided loving and supportive homes, acted as reasonable role models, set firm and fair guidelines and adopted the recommended parenting techniques but still find themselves faced with an abusive and sometimes violent child.

What do the parents do? Curefews don’t work - they are ignored; grounding won’t work unless your home is secured like a prison - the child will run away, climing through windows or sneaking out in the night;  listening and talking don’t work - you risk verbal abuse, sometimes violence. The child acts as differently from the parent as it possibly can. It stays out all night, it doesn’t come home from school. It leads its friends’ parents to believe that it is being abused, kept prisoner, being unreasonably treated at home. Its parents try to get help - but nothing is available.  The assumption is that it’s the parents’ fault: inadequate parenting skills, not enough love, not enough positive encouragement, inconsistent discipline, too strict, too lax, too aggressive, too much shouting, not enough listening…..

The routine parenting classes can even make things worse. At the one I went to the tutors didn’t seem to grasp what the parents (all volunteers giving up their Saturday) were telling them. One woman who had been abused by her alcoholic teenage daughter for two years was told to tell her daughter that the abuse and swearing was totally unacceptable and that she should stop it now. This was not a case for “choices and consequences”, because there was no choice. The poor woman didn’t know whether to laugh or cry. What, she asked, did they think she had been doing for two years?

The nightmare gets worse. The child’s invincibility is confirmed when it gets slightly injured (small scratch or bruise) while it is physically attacking its parents. In my experience, if you are a parent your right to reasonable self defence (trying to push it away or hold it still) does not extend to protecting yourself against your child (because you might hurt it!!). The police accept the defence - but not the social services. They will put you through child protection procedures without even interviewing you first. You are presumed guilty and they are rescuing your child. It is even doubtful whether proving that your child abused you will help. Apparently most abusive children were abused themselves and no doubt the parents are the most likely suspects.

So what chance of family reconcilliation? What chance of justice?  Most damming of all - what chance for the child? Is it really in the child’s interest? Does it help a child who has been bullying its parents to punish its parents? (Imagine the headlines if the victims of a playground bully were the ones excluded from school).

Despite their trauma, distress and often mental health problems caused by the experience, the parents are still the people most concerned about their child’s interests and welfare. Whatever the child has done to them or or caused to be done to them, the parents still want to see their child grow up safe, healthy and happy, fit into society as a well adjusted person and make the most of its opportunities. 

My concern is that some of the children in this position may need serious help for underlying illnesses (whether mental or physical) and the assumption that their behaviour stems from the abuse or inadequacies of their parents is preventing them from getting the help and services they really need. Even if you don’t care about the parents and agree with the presumption of guilt be careful that your hasty, well meaning and politically correct beliefs are not further damaging the child they are designed to help.

Is the popular uproar about failed asylum seekers and illegal immigrants the last bastion of acceptable racism? I’ve only met one person that was, I later learned, an illegal immigrant and I bet none of the people making political capital from this serious issue would have minded his presence here one bit. He was a white, middle-aged American, fairly well to do with a pleasant personality and he came to work in the UK.  He didn’t “sneak” into the country but entered through the normal channels as a visitor on a business visa. He didn’t stay long and was gone within a few months but by working without a work permit he was in breach of his conditions of entry and therefore an illegal immigrant, liable to removal.  While he was working here he travelled in and out of the country without once being challenged as to his intentions or reason for entry. On the other hand I know that, a few months later, an Indian national of equivalent social and educational standing and doing a similar job was detained and questioned about his immigration status after taking an internal domestic flight between two UK cities. He had a valid visa and work permit and eventually managed to sort the matter out. But it makes you think. Doesn’t it?

It is arguable that the real victims of illegal immigration and the failure of the system to detect them are the illegal immigrants themselves. Many are forced to take employment on the black market. They often work for pitifully low pay and sometimes in dangerous conditions. Think of the Morcombe Bay cockle pickers. They may have intended to come to the UK as economic migrants but whether they deliberately chose to flout the immigration laws or whether they were conned by unscrupulous trafficers I don’t know - but they didn’t deserve to die. Failures of the immigration system not only enable scroungers to thrive but also allow the vulnerable to be exploited. It may have cost the the Chinese cockle pickers their lives.

Illegal immigrants who try to play the asylum card should be sent home but is our system up to determining the genuine from the bogus? Apparently 20% of failed asylum seekers are granted asylum on appeal. A system that fails one in five people when their lives are at stake is appalling.  Over recent years the system has been tightened up to reduce the grounds for appeal. So let’s hope that the genuine asylum seekers who arrive here with no possessions, no money, no means of earning a living, frequently separated from loved ones, often unable to speak English and sometimes traumatised, disorientated and suffering the effects of torture are in a sufficiently robust condition to navigate their way through the legal system and deal with officials whose culture, language and expectations may be completely alien to them.

I read a comment recently that there were too many asylum seekers “and they weren’t even escaping from a war zone”. I presume the implication was that they therefore could not be genuine asylum seekers.  I’m not an expert but as I understand it the fear of becoming “collateral damage” either through direct acts of war or because of conflict induced poverty and famine does not necessarily amount to a well founded fear of persecution for reasons of race, religion, nationality, membership of a particular social group or political opinion, without which an asylum claim will fail.

Fortunately for people fleeing war zones the conflict is likely to make the news and even without the help of the Human Rights law, it would  create bad publicity and lose votes for any shade of government to be seen sending women and children back to a dangerous, war torn area from which they had just escaped. For people escaping less newsworthy persecution there may be no TV pictures to help them make their case.

I saw a letter on the BBC website written by a number of neurosurgeons. They were writing to Patricia Hewitt the Health Secretary asking her to reconsider providing certain drugs for recently diagnosed brain tumour sufferers on the NHS. They said trials showed the drugs were extremely effective and beneficial. One of them was Temozolomide. I know it. It was prescribed to my husband in December 2000. For him it was a miracle drug. I think everyone who needs it should have it. Not enough attention is paid to people who suffer “minority illnesses” - but something so effective must be worth every penny. Not just in the regained economic productivity of the individual, but in the extra length and quality of life it gives to sufferers and their families. It meant my husband lived long enough for his youngest daughter to know him.

It hadn’t been around when he was first diagnosed in 1986 with mixed grade astro cytoma and some type glioma with a long name I forget. He’d had had surgery and radiotherapy. He seemed OK then for 5 years but then started to lose something - not easy to determine as it was slow. He had been articluate and started to “lose words”, he lost his emotional responses and avoided conversation. In 1997 he had more surgery - another large tumour was removed. This time no more radiotherapy - he’d previously had a maximum does - and there was no suitable chemotherapy. We were told it was now a matter of “when” and not “if”. They were very sorry - there was nothing else they could do. He’d probably be OK for three years, five if he was very lucky - but then it would be the end. We didn’t believe it. There would be a breakthrough in medical technology.

He went downhill rapidly from September to November 2000 - so fast that one Saturday we rushed him in to A and E. He walked in with severe head pains, sickness and blurred vision. Two days later he needed two nurses to move him around. By the end of the week he was in a wheel chair, could hardly speak and was loosing his sight. His doctor showed us the pictures. The tumour had returned, swelled and the pressure was distorting his brain. Hopefully the symptoms were caused by the pressure and not permanent damage. There was a new drug we could try. Temozolomide. It was supposed to be very good. We had insurance didn’t we. Why didn’t we give it a try. The doctor sent for the forms for me to sign. It was nearly 5pm and he was leaving for holiday in 20 minutes. He couldn’t prescribe the drug if I didn’t sign. He’d be back in a week. I looked at Andy. A week might be too late.

The form arrived. I couldn’t really understand it - my brains were in a whirl and the words wouldn’t stay in focus. I asked the nurse question - what excatly did it say I had to pay for? It looked like everything - not just the drugs. How expensive were they anyway. She didn’t know. She went to find someone else. The lights were turned out. The doctor was waiting to leave. Everyone else had gone home. I looked at Andy and I signed the form.

Andy was wheeled back to the ward. The ward he had just left. The bed he’s just been taken from - the same sheets. He’d been treated on the NHS for years. Now the bed in the ward was costng us. I can’t remember how much - maybe £200 a day - but I didn’t realise until I got the first bill in January 2001: something in the order of £16,000. Most people don’t realise. My GP didn’t realise. If you pay for the drugs you pay for everything else too: the bed, the nuring care, the consultations with the doctor, the pharmacist dispensing the drugs, the administrator arranging the appointments with the doctor, the use of the consulting rooms.

My insurance did pay - and it continued to pay between £1700 and £2000 per month for the next 13 months. How much do you pay for a life? In December 2000 we were warned Andy had about three months to live unless the drugs worked. The doctor didn’t tell us that - the nurses did when they suggested we should try to cope with him athome for his last few weeks. But the drug did work. By the middle of January he could walk and talk again. In May we took him on holiday and he got fit and well again. In June he went back to work. He stopped taking the drug in Feb 2002. It was chemo after all and was beginning to affect his blood count. He worked full time until August 2002 and part time until Jan 2003. He continued to live an independant life and join in family activities until July 2003. Then he started to get worse again. He was deteriorating rapidly and again losing his ability to speak and walk. In September 2003 he went back on the Temozolomide. It halted the rapid deterioration. He regained his mobility but his speach continued to worsen although more slowly. In March 2004 he took the drugs for the last time. By agreement, none were prescribed in April. By mid April he was totally dependent on us and im May he died.

I always wondered what it would have been like if the drug had been available when he was first diagnosed - or even after his surgery in 1997. I read the web sites and followed the research. The new medical technology gave us nearly four more years. Our youngest daughter was 8 when her father died. She remembers him. She nursed him. If it had not been for the drugs she would probably have been too young to understand and too young to remember.

I had to pay for my husband’s drugs (at least from 2000 - 2002). They saved his life - but what if I hadn’t had the insurance? Why should people with less money or less generous employers be denied such life saving treatment? There may not be enough in the NHS budget to pay for everything but how is the cost benefit worked out? Does it have as much to do with the number of voters affected as it does with the cost and efficacy of the treatment?