Foetal Alcohol Syndrome Disorder

Sarah Airey of the Foetal Alcohol Syndrome Disorders Trust has sent in some information asking churches to consider getting involved in FADS Day in some way. There are plenty of suggestions here for things you might do. There is a variety of medical opinion about the effect of a very small amount of alcohol in and just before pregnancy, but the tragedy, today, is that many women drink quite a bit even just socially without even realising this can affect their unborn child. We have friends who have adopted a child with the Disorder and the effect on her life because of the difficulties caused is far reaching and will be with her for the whole of her life.

HOST A BIG BREAKFASD

National FASD Day - 9th September 2012

http://www.fasdtrust.co.uk/


Helpline 01608 811599

The FASD Trust  (Foetal Alcohol Spectrum Disorders) is organising a BIG BREAKFASD on 9^th September. The Trust is urging people to abstain from alcohol for 9 days and organise a BIG BREAKFASD to fundraise and heighten general awareness of the condition. FADS Day is on the ninth day of the ninth month every year. The date signifies the nine months of pregnancy. 

The purpose of FASD Day is to promote awareness of the risks of consuming alcohol during pregnancy, and to provide support and encouragement both for women during an alcohol-free pregnancy, and for the families and carers looking after children and adults affected by FASD.
Julia Brown, from The FASD Trust says, “Mums to be get mixed messages in pregnancy and social changes have led to an increase in female drinking, especially binge drinking and for younger women.”

“People are now well aware that smoking is bad for the unborn baby, but medically alcohol is more dangerous than cigarettes.  The most dangerous time is the first and last three months of pregnancy. The first three is when the foetus is forming physically; the last three is when the brain can suffer significant damage.”

“The message should be that there is No Safe Time and no Safe Limit for Drinking if you get pregnant.”

“FASD Day, our alcohol abstinence FASD and BreakFASD are aimed at drawing attention to these facts, and fundraising so that we can raise awareness of the problem.”

FASD is a series of wide ranging and preventable birth defects caused entirely by a woman drinking alcohol at any time during her pregnancy, often even before she knows that she is pregnant. Problems include both physical difficulties and memory, learning and attention disorders (see below for more details.)

·         1% of the general population suffer from Foetal Alcohol Spectrum Disorders (FASD)

·         A significant percentage of children being released for adoption suffer from FASD – with figures as high as 90% in some areas of the UK

·         Only an estimated 18-25% of those with FAS are able to live independently as adults.

Suggestions for drawing people's attention to FASD

1.    Abstain from alcohol for a 9-day FASD

Abstain from alcohol for the first nine days of September and donate the money that would normally be spent on alcohol to The FASD Trust.

Register your interest in the 9-day FASD from alcohol by emailing info@fasdtrust.co.uk for a joining pack. Each day during September, we will be e-mailing you a note of encouragement.

We would like your photos, tweets, Facebook comments, etc in return.

2.    Big BreakFASD

Menu Suggestions:

On 9th September at 9.09am (or even 9.09pm) invite all your friends round for a delicious Big BreakFASD for a donation.

·         Continental selection of croissants, Danish pastries, toast and preserves, coffee/tea orange juice

·         Bagels, scrambled egg and smoked salmon

·         Eggs Benedict

·         Kippers or Haddock

·         A pile of pancakes with maple syrup

·         Traditional bacon, egg, sausage

To register your interest in holding a BreakFASD, send an e-mail to Patrick at info@fasdtrust.co.uk for a poster, invitations to send to your friends, suggestions on how to make your event successful and a link to a video to show your friends explaining about FASD and the work of The FASD Trust.

3.    Church Involvement

As 9th September falls on a Sunday, we are inviting churches to take 9 minutes of their service to stop and pray for all those affected by FASD and the work of The FASD Trust.
Register your interest in praying for us and more details of how your church can be involved in this project, including daily prayer points for the 9 days, Powerpoint slides for your church notices, and how to organise a church BreakFASD, please e-mail Julia at prayer@fasdtrust.co.uk.

To find out more about plans to mark FASD Day in 2012 and to see how you can take part in the planned activities or to make a donation, please see www.fasdtrust.co.uk

Make a donation

Donations can be made through the Charity Choice web site: http://www.charitychoice.co.uk/the-fasd-trust-15175

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More about FASD

Foetal Alcohol Spectrum Disorders (FASD) is an umbrella term for several diagnoses that are all related to prenatal exposure to alcohol (i.e. while a baby is still in the womb).  

FASD is a series of preventable birth defects caused entirely by a woman drinking alcohol at any time during her pregnancy, often even before she knows that she is pregnant.

·         1% of the general population suffer from Foetal Alcohol Spectrum Disorders (FASD)

·         A significant percentage of children being released for adoption suffer from FASD – with figures as high as 90% in some areas of the UK

·         Only an estimated 18-25% of those with FAS are able to live independently as adults.

These defects of the brain and body exist only because of prenatal exposure to alcohol. Often the condition goes undiagnosed, or is partially diagnosed / “misdiagnosed”, for example as autism or ADHD, and this can lead to secondary disabilities.

The challenges a person with FASD faces may include

The Brain                                                                  

Intellectual Disability; lowered IQ    

Memory Disorders

Learning Disorders

Attention Disorders

Sensory Disorders

Speech and Language Disorders

Mood Disorders

Behavioural Disorders

Autistic-like Behaviours

Sleep Disorders

The Body

Visual and Eye Defects

Hearing and Ear Defects

Mouth, Teeth and Facial Defects

Weak Immune System

Epilepsy

Liver Damage

Kidney Defects

Heart Defects

Cerebral Palsy, Muscular Defects

Height and Weight Deficiencies

Hormonal Disorders

Skeletal Defects

Genital Defects

Secondary Disabilities

Loneliness

School Expulsions

Addictions

Chronic Unemployment

Promiscuity

Unplanned Pregnancies

Poverty

Criminality

Prison

Homelessness

Depression and Suicide

About the FASD Trust

The FASD Trust provides support, training and information to those affected by FASD (Foetal Alcohol Spectrum Disorders), their parents/carers and the professionals, such as teachers, doctors, social workers and others seeking to assist them.

In addition, The FASD Trust seeks to raise awareness of FASD, in order to improve the understanding of those affected and the support offered to them by the wider community and to seek to lower the incidence rate of FASD in the UK, as people begin to understand the potential risks of drinking alcohol during pregnancy.

The FASD Trust was set up in 2007 by Simon & Julia Brown who have an adopted daughter affected by FASD. After their daughter was diagnosed, Simon & Julia were surprised by the lack of support and information available and The FASD Trust was set up in response to the "gap" they encountered in support services and the lack of knowledge about this condition.

The FASD Trust reaches out to all sectors of society, to ensure the vulnerable individuals with FASD are supported and protected. They now run support groups for families across the UK, have a Medical & Healthcare Professionals Forum, have guides available for teachers, and are developing a number of other resources, especially for social workers, foster carers and adopters, as many of the most severely affected children are found in the care system.

The FASD Trust also works with young teenage parents, grandparents, birth parents and seeks to be compassionate in its response to anyone affected by this lifelong, but not life-limiting condition.

To register your interest in holding a BreakFASD, send an e-mail to Patrick at info@fasdtrust.co.uk and we will send you a poster, invites to send to your friends, suggestions on how to make your event successful and we will send you nearer the time a link to a video to show your friends explaining about FASD and the work of The FASD Trust.

Share the Care

Imagine how you would cope if you were feeling generally very ill and tired and then you were told that the only way you could keep yourself alive was to have four hours of exhausting treatment two or three times a week in a hospital miles away from your home. This is the situation that faces people suffering from end stage renal failure (kidney disease). Haemodialysis, as it's called, is usually the only treatment available to people with severe Chronic Kidney Disease until such time as they can receive a transplant and as most of us know, the supply of translpant organs is not sufficient to meet the need, by a long way. Dialysis means that a person has to be connected up to a machine that takes the blood out of their system and pumps it through an artificial kidney which removes the toxins that are the product of every day living, and then returns it to them 'cleansed'. If the right equipment can be installed and if the person concerned has help and the confidence to undertake such a rigorous procedure each week, dialysis can be done at home. However, many people do not have the room to install the machines or they might not have a suitable water supply. Others simply can't manage the procedure themselves and may feel too ill to tackle it without on-hand medical supervision. This is where local hospital units that allow patients to come in and dialysis themselves with just a small amount of assistance are invaluable. If someone with kindey disease can travel a relatively short distance to a hospital with what's called a Shared Care Unit, they can be taught to manage their own dialysis fairly independently but  with on-call medical back-up if they need it. This means that fewer hours of medical practitioners' time are taken up than would be the case in a traditional dialysis unit and it also means that patients and their relatives can be supported and gain confidence in the procedures. They may then, at a later date be able to transfer to home dialysis.

At the moment people in our area generally have to travel to Darlinton, York or Leeds for dialysis. You can imagine that if you are also trying to hold down a job or look after children it can be extremely disruptive to have to travel so far. The York Teaching Hospital NHS Foundation Trust has launched a SHARE THE CARE appeal. They are aiming to raise £200,000 in order to provide a shared care dialysis unit at Harrogate Hospital.

There are around 23,000 people with Chronic Kidnet Disease in North Yorkshire.  For 175 with advanced disease, dialysis is a life line. You may well know someone who has the early stage of the disease. If you would be interested in learning more about this project or helping to fund raise,  visit www.york.nhs.uk/fundraising or e mail lucy.watson@york.nhs.uk

You can also make donations via www.justgiving.com/yorkteachinghospital

Smooth and efficient dialysis in a location near to home can transform the lives of  people who often feel fearful and very unwell, enabling them to live normal lives holding down a job, caring for their families and enjoying activities the rest of us take for granted.

Volunteering Opportunities

Did you know that the Alzheimer's Society is always looking for people who would like to volunteer? The Society offers a great range of support to sufferers and their carers and could not do so without the dedication of large numbers of volunteers. The kind of things they contribute varies greatly. Help is needed with fund raising, administration, maintaining information sites and libraries, providing transport and organising social events. Befriending someone with dementia, giving 2 or 3 hours a week to be with them, can mean that they can can continue a hobby or interest and that their carer can also have a break to do something that allows them to get out and find refreshment. Volunteers say it's fun and there's something for everyone no matter what your gifts. There is a proper induction programme, on-going training, one-to-one or group-based support and expenses are re-imbursed.

There are around 4,800 people with dementia of one kind or another in the Ripon,  Harrogate and Craven areas alone, two thirds of whom live in the community. By 2025 there will be over 1 million people with the disease in Britain and is is essential that adequate support and expertise in caring is built up over the next few years.

If you think you might be able to help, please contact

The Volunteering officer, Alzheimer's Society, Low Mill Units, Phoenix Business Park, Ripon HG4 1NSP  01765 690900  ripon@alzheimer's.org.uk

The national Alzheimers Society website also has a wealth of really useful information. If you go to the bottom of the home page and enter your postcode, you can find an excellent list of all the services in the Richmond and Hambleton and the Ripon and Harrogate areas.

 http://alzheimers.org.uk

New Thinking About Health Care

I gave up reading the church press in 1992 as a result of their coverage of various issues which seemed to me to highlight everything contentious. However, I think I just might be tempted back into readership of the Church Times following their launch, this week, of a new Health Supplement. The first issue looks at the impact of new reforms in the Health Service, examines health care chaplaincy and asks how the churches can more effectively work alongside those who have health problems. It's a promising start!

One of the things that the Mission Resourcing Team is looking at in this diocese, at present, is how to support churches better to keep in contact with and care for the very elderly and those suffering from dementia. So often, after committed membership of a particular church, an elderly person moves away and into a nursing home and is somehow lost sight of by the community of faith just at the point they are vulnerable to isolation and most need the friendship of a loving church family. I'm looking for people with a commitment to the elderly - whether this arises from interest, experience, expertise or a love of being with older people - to join an advisory group who will look at the provision being made for the elderly in our diocese in terms of visiting, worship, practical and spiritual support by churches. The brief of the group will be to and encourage and inform good care, enabling us to offer effective support and friendship to more people. If you would be interested in this, please contact me. The group will meet about every three months.

Should Courts Ram Treatment Down Throats?

I must admit that I am somewhat peturbed by the ruling by Mr Justice Peter Jackson that a 32 year old patient suffering from anorexia nervosa who does not want treatmtent, and whose family support her decision, must be given treatment which amounts to force feeding, possibly for a considerable period, in order to preserve her life. I had assumed, when I heard the news, that the patient was unconscious or was not able to express a clear wish. However, reading the report of the case, this does not seem to be so. I do not want to get into the merits or demerits of the particular case - that is not appropriate - but I do want to say that the judge's decision has given me pause for thought. He appears to be arguing that the courts have grounds for becoming involved in an individual's treatment in order to save life, even when the individual concerned is opposed. Of course, the State already permits this in cases where doctors section patients and, no doubt, there are grey areas, here, when psychiatrists, patients and families disagree on whether there are sufficient grounds for sectioning a person and compelling them to have treament. However sectioning a person does not quite seem to equate with a ruling to force feed them. As far as I can tell, you would have to physically restrain someone two or three times a day in order to do this or repeatedly sedate them against their will and, if you were to do the latter you would hardly be helping to restore them to patterns of eating that would sustain a life that was to any degree 'normal'. Passing a naso-gastric tube on someone who is willing can be distressing enough; to hold someone down and do it against their will time and time again could be described as very cruel. One wonders whether the psychological trauma caused would militate against the patient ever recovering and, indeed, it would be a pretty dehumanising procedure for nursing and medical staff to have to undertake.

I've just been reading A.N. Wilson's After the Victorians; Arrow Books 2006. In the chapter The Accursed Power, he discusses the treatment of suffragettes by the Liberal government of the time. What is striking is that several members of the militant wing of the movement who had been imprisoned and were on hunger strike were straight-jacketed and force-fed on the order of the then Home Secretary (Winston Churchill), again, on the grounds that they were hysterical and did not know their own minds and that it was in their own best interests for the State to intervene to save them from themselves (not to mention the Liberal party's interests!) There is something rather disturbing about State or Courts (which certainly were in Churchcill's time and still are largely male) sanctioning this kind of treatment of women with all its overtones of physical abuse. When a person is sectioned it is usually for their own safety and so that they can have the best possible chance of being restored to health - it is for their demonstrable good. I cannot see that consigning a fully aware person suffering from anorexia to repeated interventions of a distressing nature is going to be anything other than very psychologically damaging - it might well be argued that it will work against their health or any chance of recovery that remains. Should the patient not recover, this will certainly not allow them a dignified or peaceful death.

I can see many of the arguments for intervention to preserve life, but I am uneasy about this decision to intervene in the treatment of an individual in ways that will undoubtedly cause a great deal of distress.

Nerves, Muscles and Laughter

I recently came across some very simple but helpful guidelines for talking to peole suffering from dementia. Ten things that, if put into practice, really help.  A person with dementia is experienceing loss of memory, mood swings, anxiety and problems with communication and reasoning. 

• Remember that mood and atmoshpere are very important; how you say things and your tone of voice is more important than what you say.
• Listen, have chats, laugh, give them your full attention. 
• Try to find things you can do together, breaking activities down into small steps.
• Be reassuring.
• Avoid scolding, contradicting or correcting.
• Look behind the person's words for their meaning - how are they feeling?
• Show affection in ways that are acceptable to the person.
• Be flexible and tolerant.
• Allow a person time to get to know you - meeting new or unfamiliar people is particularly difficult.
• Never talk over the person - include them all that you say and do.

As with all communication, probably eight tenths of what we communicate is through body language and tone. To remember this makes understanding the words that are being said less important and both you and the person you are talking to will relax. I had a friend who was training as a doctor and whose grandmother had fairly advanced dementia; she used to sit with her grandmother learning lists of nerves and muscles out loud, but in a tone as though she was reading a story. She was able to spend pleasant half hours with her grandmother when they would laugh alot and take pleasure in each other's company and get her revision done. Her grandmother was helping her and at some level she seemed to know this. It is important that people know they are valued; a sense of not being valued by anyone may make dementia a lonely place to inhabit.

University of Leeds Diamond Award

The Queen has been giving Anniversary Prizes for higher and further education achievments to mark her diamond jubilee. At an investiture at Buckingham Palace she made awards to 21 academic insitutions (chosen from 140 applicants) for projects which have shown innovation and excellence and which have made a significant difference in their field. The Institute of Medical and Biological Engineering at Leeds University was one of the intstitutions recognized. Here, academics have worked to improve the quality of the second half of life by developing longer-lasting hip joints, improving joints and techniques in surgery for knee reconstruction and pioneering a 'biological scaffold' that allows a patient's own cells to grow into a heart valve implant ensuring that the valve will last longer than the 10-15 years currently attainable. This technique, which does not provoke a response from the patient's own immune system, makes the use of such heart valves particularly suitable in children. 

The Joint Director of the Institute, Professor John Fisher, is an engineer who came to medical research after another career designing parts for the motor industry and he works jointly with his wife, Professor Eileen Ingham, who specialises in immunology. The work of the Institute has attracted recognition because of its wide-reaching contribution to the care of tens of thousands of patients around the world. Research carried out in Leeds has enabled many to have medical interventions that have lasted considerably longer than they would have in the past. Professor Fisher said, 'The goal of 50 active years after the age of 50 is within reach' and, of course, the more active people can stay, the more that reduces the incidence of many serious diseases.

Congratulations to all the staff at the Institute of  Medical and Biological Engineering in Leeds! Professor Fisher is also Deputy Vice Chancellor of Leeds University.    

Buckets of Inspiration

Since working on a haematology unit thirty years ago where most of our patients had leukaemia, myeloma or lymphoma, I've always taken an interest in the Leukaemia Research Society which does cutting edge research into blood cancers. So I was really inspired to come across a blog called 'Alice's Bucket List'. Alice is 16, lives in Ulverston in Cumbria and and suffers from Hodgkin's Lymphoma. She writes that she doesn't seem to be winning the battle with her cancer. A bucket list is what she decided to make for herself - a list of things she wants to do 'before she kicks the bucket'. She says some of them will just always remain dreams, but others she has already achieved. Top of her list is her desire to get everyone eligible to join a bone marrow register. Her blog is heart warming and inspirational. Do have a read and go onto the links to the various bone marrow registers which she gives.

http://alicepyne.blogspot.com/

You have to be between 18 and 49 to join the British bone marrow register. A bone marrow transplant can restore someone who suffers from a blood cancer to full, long lasting health, but the marrow of donor and recipient has to be extremely carefully matched. If you are a regular blood donor, you can ask about joining the register at your next donor session. Or you can apply to join online. Bone marrow donation can be done in one of two ways - the first does not even require a general anaesthetic and neither requires surgery. The marrow is either taken from the general blood circulation or from the hip bone under a general anaesthetic. 

Unfortunately, I'm too old to donate marrow, but I wish I could help Alice make one of her dreams come true. Bone marrow transplant is still a pretty radical procedure, but it transforms the lives of many very sick people of all ages from children to quite elderly and the gift can be given so simply. 

The British Bone Marrow Registry

http://www.nhsbt.nhs.uk/bonemarrow

And PS! Another unsung service that many of our military personnel give is the regular donation of blood and marrow to specialist haematology units. Because they all know their blood group, they often fulfil a valuable role in being willing to supply white cells, platelets and other blood products for patients with rare blood groups. 

Life Sciences Teach Us About Growth

Some more good news! The Life Sciences industry (mainly focused on the creation and refinement of therpeutic drugs) is one area where Britain still makes a really major contribution to the world scene. We have four of the world's top 10 universities and there are welcome signs that the number of students studying physical chemistry is increasing. Indeed, it has been the International Year of Chemistry in 2011 and (unlike the Decade of Evangelism when church attendance actually fell!) there has been an increase in the number of students reading chemistry at university and there are plans to open two new chemistry departments at Lancaster and Kings, London. Since 2005, there has been a 25% increase in the number of students taking A level chemistry.

The science community must be pleased with the government's anouncement that there will be an extra £180m to fund processes which support getting the drugs from early stage development to clinical use (an area known by those in the profession, somewhat unfortunately, as the 'Valley of Death' because promising projects disappear into clincal trials never to see the light of day.) This is tied up with slightly more controversial plans to allow registered health care companies to access NHS patient records to support their research.  The 4,000 UK life science companies who could benefit will be able to enhance their contribution both to new treatments for a number of diseases and to overall economic growth, so this seems like a win win package. 

My husband's company releases employees to spend days teaching science in local schools and these days are always greeted with much enthusiasm by pupils and staff alike. They are also hugely enjoyed, it goes with out saying, by those released from workaday drudgery to be real 'mad scientists' under the attentive gaze of a class for the day! We need young people to study pure science subjects in order (among other things) to create the next generation of applied scientists.

It struck me that theologians ought to think along similar lines. Religious studies and
theology are valuable in so many ways apart from simply being of interest to those with a faith or the few intending to become ministers and priests. The study of theology opens a student up to history, philosophy, ethics, linguistics, sociology, psychology, art, music and textual criticism. One of my university colleagues once remarked that he was amazed that theologians seemed to have the capacity to be in dialogue with (and often teaching courses in partnership with) almost any other discipline in the university. The skills learned through studying for a theology degree can be used in so many ways.

Taking a leaf out of the scientists' approach to generating fresh interest in their subjects, we ought to be releasing our best theologians (and in this, I would include some clergy and readers) for days to help with the teaching of religious studies and other subjects in schools. In my last parish I used to help teach the A level philosophy modules in a local comprehensive; there were always a dozen or so students and I met some inspirational young people and learned a huge amount myself. Most importantly, I struck up some relationships that have lasted beyond the classroom as I've followed the students' progress into theology and philosophy courses and all sorts of related areas of study.  

Assisted Suicide

The rather official sounding Commission on Assisted Dying was set up by a group of campaigners. Funded by Sir Terry Pratchett and chaired by Lord Falconer, a barrister and former Justice Minister, it has taken evidence from 1,300 sources during a year long enquiry. Its critics claim that it did not start from a neutral point, however, and was biased toward a change in the law. Unsurprisingly, its findings are that the law should be altered to allow assisted suicide under certain very strict conditions

• the person must be terminally ill and judged to have less than a year to live
• two indepenedent doctors must agree
• the person must be over 18 and of sound mind
• the person must be able to demonstrate that suicide is a voluntary decision on their part.

You can read more about the Commission's recommendations and reactions to them on
http://www.bbc.co.uk/news/health-16410118

All very difficult yet fairly predictable, I think. The aspect of the argument that seems to have been overlooked in most of the reports I've listened to today is this: to allow assisted suicide is not something that affects only the individuals who are faced with a very, very difficult choice about whether to end their own lives. If we change the law to allow assisted suicide, people will be needed to organise the means of suicide and, probably, institutions will arise whose business it is to make suicide possible. Who will these people be? Will doctors, nurses and pharmacists take on the preparation of suicide drugs as part of their everyday work? Once the preparation of such drugs is allowed, it will only be a small step to the plea for someone to administer them in cases where the dying person cannot do this for themselves. This changes society's entire relationship with the medical and health care professions and is in danger of diminishing the trust we would feel able to put in any institution, such as a hospice or nursing home, which decided to adopt assisted suicide as an option for its patients. (You can image, 25 years down the line, protocols where staff have to ask the question, 'Would you like to discuss suicide?')

Much of the argument today has been based around the perceived and strongly articulated need of individuals either to be able to take their own lives or to have the law back up their own firmly held conviction that suicide is, or ought to be, an avoidable tragedy. I believe that people in both groups should be enabled to explore, honestly, their own position and that counselling and support should be available for those who want to think about suicide, without any penalty in law for the counsellor or supporter. However, to suggest the legalisation of the act of helping someone to die, even by their own express wish, is a step too far. It is being suggested by the Commission without a thorough survey of the effect this will undoubtedly have on our attitude to health care professionals, and to elderly and vulnerable people who often don't have much of a voice in these debates. How would we monitor and police counsellors and supporters, some of whom may turn out not to be as impartial as they appear? (And believe me, such cases would very quickly arise.) As part of the debate, I would like to see much more research done on the question of how we allow doctors not to strive officiously to prolong life and how this is discussed with patients.

This afternoon I am going to a meeting to prepare for a seminar on intervention in terminal care. How much is care allowed to intervene in the dying process - should it be allowed to and at what stages? How involved are patients in decisions? And what is the cost to the person of non-intervention or intervention? What are the boundaries of hospice care?

This is an agonizing dilemma for many caught up in progressive illnesses and for their carers and the professionals looking after them. But please let us approach the question from a wider base. It is true that sometimes the 'good' that individuals desire and the 'good' that we all, as a society, need to preserve the life and safety of the many (including the most vulnerable) can be contradictory. To place death under the gift of human agents and to welcome that as a 'good' for society is a radical departure from most ethical and religious philosophies, codes and teachings.  

There are some very good rapid response comments on the British Medical Journal website which show where many doctors' thinking is on this

http://www.bmj.com/search/assisted%2520suicide 
  

Time

I've been reflecting on the value given to time in our society just lately. This was partly brought on by the depression I felt at reading the Care Quality Commission's October report which found that half of all the hospitals they looked at were failing to care properly for elderly patients.

http://www.nhs.uk/news/2011/10October/Pages/report-on-elderly-hospital-care-released.aspx

The two areas most commonly cited for concern were nutrition and personal dignity. In the Health  Service, we seem to have locked ourselves into a system in which there is quite simply insufficient time to do the things that are needed to help people who might be slow or confused or frightened or uncooperative; this trend began many years ago. I remember as a very junior nurse when the overlap between shifts was cut as 'unnecessary'. This meant that reports between shifts were hurried and small aspects of attention to care disappeared -  long term patients no longer got their hair washed, deaf and blind patients had to manage appointments in other departments of the hospital unaccompanied and equipment was not so regularly inspected and cleaned. Tiny, seemingly insignificant little things that contributed, over time, to a great avalanche of care not given - care that, if you listened to them, mattered very much to patients. Seemingly, now, levels of staffing in many hospitals have reached the point where it is not possible to take the ten minutes needed to feed a patient their lunch or to deviate from the work plan should someone need immediate attention to go to the toilet. 

Last week's paper brought the news that GPs' pay will be increased take account of the fact that they are going to be directly responsible for commissioning and organising hospital care for their patients. The aspect of this news that alarms me is the fact that we are asking already stretched GPs to do yet more work - paying people more does not produce more time in which they can get things done.

It's not just in the area of health and social care that time is squeezed - speak to teachers, sales and delivery sevices, lawyers, local government officials. It seems that the concepts of management which largely shape our working lives give a value to (and often spend time measuring) almost every aspect of our lives except time itself. I recently taught a module for a university whose systems of evaluation and examination were so complex that I spent more time reading the regulations than marking the papers. All this eats into the time available for preparation and consequently into the quality of the learning experience for the students. It's always very difficult to argue in this way because those who manage, inspect and appraise will point out that unless there is constant accurate inspection we do not know what quality of service is being achieved. However, I think that we are beginning to discover that too much measurement in ways that are driven by targets often questioned by members of the trades and professions concerned is not producing the required results. This is sadly becoming all too clear in the case of the care of the elderly by health and social services. We have created systems that control individuals and try to sqeeze out of them more than the time avaialable can deliver. Meanwhile others are unemployed and can find no way to make a contribution to society - over a million young people without jobs.

 Of course managers are only servants of the social expectations that are laid on them. I am not singling them out for blame. And I am not arguing that we should not make good use of our time and be held to account. But let's ask a few questions about what 'good' means. William Penn once wrote that time is what we most want but what we use worst. In our society, we have the odd situation that we complain about being under pressure of time most of our working day and we say we struggle to have enough time to spend with our children and families, yet the self help section in bookshops is crammed with books giving advice about how not to waste time or how to avoid procrastination.  This paradox is mirrored in the unhealthy balance in our attitude to food - we are bombarded constantly by a ridiculous choice of foods, yet we, as a society, are fixated on dieting. I have friends from other cultures who are as frankly bewildered and even affronted by our dependence on diaries, watches, 'timeslots' and schedules as they are by the overwhelming range of foods available in our supermarkets.

At the start of another year, then, you can guess what my resolution is going to be! Ministry as an archdeacon calls for a lot of careful forward planning to fit things into the diary. Many of the things I do support occasions and projects that are important to the people concerned. As with everyone, I cannot simply fail to keep commitments. However, I would like to adopt a pace that allows more time to respond to the unexpected, to linger and listen, to be caught in the kind of 'doing nothing' or 'wasting time' that results in deeper relationships and new ideas. Isn't it usually heart-warming when someone appears to want to spend time with you - to linger and ask one more question or tell you something that certainly would not have come out in a rushed and scheduled exchange? So this is going to mean starting the day with more time for prayer, cramming less into the diary, being willing to say, not 'no', but 'please could you wait a little?' It's going to mean expecting things to take as long as they take and not trying to get more things done in a morning than can be done well. I guess the key to all this is taking responsibility before God for my own time - not allowing myself to become so much a slave to expectations that I allow myself to blame others for my lack of time. In 2012 I'd like to make a small stand for a more healthy attitude to how we use our time!    

Mervyn Morris, the twentieth century Jamaican poet and academic, puts it like this.

Give T'anks

Anodda year of love.

Give t'anks. An' pray

dat God-Above

will seh to time, No way.

No way:

de word is love.

         

Health Care Assistants

Baroness Masham of Ilton, a cross bench life peer who campaigns for health causes and comments on health and disability issues, used the debate in the Lords on the Health and Social Care Bill to call for a mandatory register of health care assistants. This follows a comment from the health minister, Earl Howe, which showed that nurses who have been struck off the register can still be employed as health care assistants. The Nursing and Midwifery Council is obliged to inform the Independent Safeguarding Agency of any nurses who are struck off and who pose a risk to patients but others can work as health care assistants under the assumption that they will always be supervised. As any of us who have visited wards or nursing homes at night know, supervision is often not always exactly first hand and immediate.

Baroness Masham is planning to put forward an ammendment to the Bill which will make a register of health care assistants mandatory. At present, the Bill makes provision for a voluntary register only. I agree with her concern that, at present, there is no protection for some of our our more vulnerable patients from carers who maybe just don't make the grade and don't offer the good standard of compassionate care given by the vast majority of carers. Baroness Masham wants to see some very basic training given as a condition of entry to the register. She herself has spent periods in hospitals recently and points out that, during busy periods, carers spend a lot of time carrying out vital basic care unsupervised by nursing staff. The fact that most give high quality care does not prevent some from falling far short of accpetable standards, as we have seen in some recentrather worrying reports on hospitals and nursing homes. I am sure that most carers would welcome the opportunity to receive training and update their understanding of resources and equipment available.

Baroness Masham, who lives in North Yorkshire, has been a tireless campaigner for health issues  http://www.parliament.uk/biographies/lords/26567  She is the senior female life peer in the House of Lords, commenting, especially, on health and penal affairs, drug abuse, farming and horticulture. As a Roman Catholic, she is patron of the Margaret Beaufort Institute in Cambridge which provides theological education for lay women. http://www.margaretbeaufort.cam.ac.uk/ The Institute is an inspirational community whose students I was privileged to teach and supervise during my years with the Cambridge Theological Federation. It sets out 'to offer transforming experiences for women, the community and the Church through theological education, professional pastoral practice and personal formation, assisting women to discern God’s call and preparing them for lay ministries and Christian discipleship in today’s world.'

She also runs the Masham Riding Centre http://www.mashamridingcentre.com/  

Autumn Crocuses Provide Hope of Cancer Cure

Scientists at Bradford University are developing a drug which is capable of destroying the blood vessels that supply malignant tumours. This is a very hopeful pharmocological breakthrough in the treatment of cancer. Clinical trials will be carried out at St James' University Hospital, Leeds, so it can truly be said to be a Yorkshire contribution to progress in oncology. The research team is led by Professor Laurence Patterson, Director of the Bradford Institute for Cancer Therapeutics. The new drug will not have the awful toxicity of many of the drugs used currently to destroy cancer cells; most anti-cancer drugs attack healthy cells as well as malignant ones and therefore have devastating side effects which can often be more unpleasant than the symptoms of the disease itself. The researchers have so far carried out tests in mice on sarcoma and on lung, colon, breast and prostate cancer with very promising results and a marked lack of side effects. It is early days yet and this drug will not be generally available for a number of years. (Some reports are suggesting possibly 18 months, depending on how the trials go; other scientists are less optimistic and are talking of years as the laboratory trials are still at early stages and have only included studies on mice.) However this does seem to be one real breakthrough among others in the treatment of solid tumour cancers and the scientists carrying out the research seem to be optimistic that this is indeed a significant development in the whole range of treatments available for cancers. The drug is based on a substance called colchicine (normally highly poisonous) which is obtained from autumn crocuses.The colchicine is chemically 'capped' so that it can travel around the body without causing harm until it reaches a tumour; it is then 'uncapped' by the action of proteins  present around a tumour called matrix metalloproteases and it and destroys the blood vessels supplying the tumour so that the tumour withers and dies.   A walk through Thorp Perrow Arboretum last weekend provided ample evidence that we are indeed in the season for the autumn crocus, so this seems a particularly appropriate time for this interesting anouncement.

For further information and measured comment see Henry Scowcroft's article
http://scienceblog.cancerresearchuk.org/2011/09/12/crocus-smart-bomb-cancer-cure    

A Pharmacist's Story

I've just received my summer newsletter from a friend who is working as a pharmacist in Vellore, South India.

'A cow lies happily across the main road, barefoot toddlers play by the roadside, a chicken is being waved over puffed rice by a tree shrine...the day begins.'

She has been there for a number of years now, helping to run the dispensary and organising training for the many medical staff. She routinely finds employment as a pharmacist in the UK during her leave in order to be able to finance her next year's work in India. The hospital where she is based is the Christian Medical College and Hospital in Vellore which was founded in 1900 by Dr Ida Scudder in response to the suffering of the women of rural South India. Today, it is an inspirational place - one of India's leading hospitals with over 2,000 beds spread across its main site and a number of outlying sites. In 2010, it was named 'India's Most Socially Responsible Hospital'  in the Indian Health Care Awards and it was also runner-up in the 'Best Multi Speciality Hospital' category.  My friend writes that, this year, they have daily treated 2,166 in-patients and 6,180 outpatients from all over India, with doctors routinely conducting ward rounds in Tamil, Hindi, Telugu, Bengali and English. The average daily birth rate is 45; every day 125 operations are performed and 1,540 radiological tests carried out. These are fairly staggering numbers by any standards.

Christian Medical Cllege, Vellore, India with PI Suresh David
crash2Ishtu.ac.uk

Many patients cannot afford the full cost of their care and the Friends of Vellore have a 'person to person' scheme. Donations go into a fund which doctors and social workers can access to help individual patients pay the expenses of their medical treatment and care. CMC does not distinguish between rich and poor or between those of different beliefs and creeds but treats every person who presents on the basis of their health care needs and so this fund is a vital support to the the work of the hospital. To give some examples of the kinds of need, a new born baby with neonatal sepsis was hospitalised for 20 days at a cost of £299; his family's income was £7.00 per month. A mother with severe anaemia required a Caesarian section and was hospitalised for 7 days at a cost of £199; her family's monthly income was £11.00. Both patients paid a proportion of their own costs, borrowing money to do this, but the hospital was able to make a substantial contribution through the person to person fund, reducing the loans these families had to take out to a manageable size. 

I find the story of this hospital and its sacrificially self-giving staff inspiring and moving. The Christian Medical College seeks to be a witness to the healing ministry of Christ through excellence in education, service and research. You can see more at

http://www.cmch-vellore.edu/

or find out about the person to person scheme on

http://www.friendsofvellore.org/person-to-person.html    

Florence Nightingale

On 13th August, the Church of England commemorates Florence Nightingale. She was born in 1820 into a very well-connected, upper-class family, Unitarian and Abolitionist on her mother's side, Anglican and Latitudinarian on her father's. Her family knew most of the leading Tory and Whig politicians of the day.

When she was 17, she had what mystics call an 'audition'; she heard God speaking to her, calling her into His service. During her life, she had four further mystical experiences, but this audition, at the age of 17, was particularly interesting since, at the time, she had no knowledge of the mystical tradition and, in fact, came from two traditions that are peculiarly averse to mysticism. In later life, she undertook a learned study of mystics like Catherine of Sienna, Teresa of Avila and St John of the Cross, but, at 17, she had little background to help her interpret what God might be asking of her. Later, she said that she had an idea that this call involved turning her back on the conventional expectations that she would marry and live a life of comfort. It was a call to search for active ways in which to serve God. She had a hard time of it! Years later, she wrote, 'I would have given my all to the church but she would not have it; she sent me to teach children, but gave me no training.'

Florence had a hard time with her family, too. She had to fight her mother to continue with her maths studies, deemed unsuitable for a girl. When, in 1844, she anounced that she wished to nurse, her family was horrified, as horrified, she later wrote, as if she had announced her intention to turn to fraud and embezzlement! Eventually, she won their agreement, if not their favour. On her way back from a tour of Europe, she stopped at Kaiserwerth, in Germany, where she trained as a nurse with the Lutheran order of Deaconesses. When she returned to London, she briefly ran a hospital in Harley Street.

In doing all this, she flew in the face of the received wisdom of the time, arguing with her family, achieving a level of education that was thought unsuitable for a woman and introducing the concept of training into the world of nursing, which was largely, at that time, a job carried out by untrained women of the lower classes and ex-soldiers. Undoubtedly, she beacme a very competent nurse by the standards of her time. In England, she introduced cleanliness, decent food, call bells, proper sanitation and individualised care. At Scutari, during the Crimean war, she managed four miles of beds, each 18 inches apart. In today's terms she was something like the Chief Executive of a medium sized hospital trust with all the attendant problems of supply and all the frustrations of constantly changing government policies.

History has sentimentalized her as the 'Lady with the Lamp', a dedicated nurse, smoothing the fevered brows of dying men. Florence Nightingale's outstanding achievement, in fact, was as an administrator and statistician, not as a nurse. Her great contribution to nursing during the Crimean war was to persuade the Generals, by means of detailed statisical research, that 6 times the number of soldiers died of infection in military hospitals as of wounds acquired on the battle field; and then to make use of her family's political influence to improve sanitation and nutrition in British military hospitals. It was through her pioneering work in the use of graphs to represent statisical findings that she made possible advances in sanitation at Scutari and, after the war, in Britain and India. She invented a particular form of pie chart, known as the polar area diagram, which she used to illustrate seasonal causes of patient mortality at Scutari. She was a friend of the mathematicians Mary Somerville and Ada, Lord Byron's daughter and she beacme the first female member of the Royal Statistical Society. 

Historical biography has dealt her a poor hand in the way it has represented her solely as a nurse - the Lady with the Lamp who founded St Thomas's School of Nursing and lost her own health through overwork in the Crimea, becoming a chronic invalid and returning home to write a modest text book, 'Notes for Nurses.' She was so much more! A doggedly brilliant public health reformer, a deeply committed and devout, if unconventional, Christian and a considerable amateur theologian and classical scholar. In 1850-2, she wrote an 800 page work entitled, 'Suggestions for Thought to Searchers After Religious Truth' which includes her own theodicy, unique as a nurse's theory of evil and suffering. The work contains prophetic, radical and heterodox ideas. She believed passionately in education for all and in an educated electorate, predicting that, 'One day, women will take an active share in the affairs of state through parliamentary government'. She utterly eschewed the frivolous, leisured life of women of her class.

In 1850, she wrote in her diary, 'God called me this morning and asked me would I do good for Him? For Him alone, and without reputation.' When God called her, she did not vacillate, making plans haphazardly, saying 'yes' and 'no' at the same time. She single-mindedly sought out, found and followed her vocation. She trusted alone (and often she was very much alone) in God's faithfulness and in the 'Yes' of God that is found in Christ. She wrote, 'The promises of God are fulfilled in loving obedience.'     

Claire Rayner; Compassion in Nursing

I was interested to read that the late Claire Rayner OBE was concerned, as I have been, about the place of compassion in nursing care (see my post 'Do We Support Nurses to Care?' 22nd February.) During her life, Claire, a labour supporter (though latterly she joined the Lib Dems as a protest over Labour's plans for the NHS) was President of the Patients' Association, a member of the Prime Minister's Commission on Nursing and a patron of the Medical Foundation for the Care of Victims of Torture http://www.torturecare.org.uk/

It has been recently announced that her family and the University of Huddersfield's Centre for Health and Social Care are co-operating to establish a new scholarship for doctoral research which makes a significant contribution to understanding how more compassionate care can be delivered by nurses and midwives. Although I expressed some misgivings about the effect the over-academicisation of nursing has had in discouraging those who are motivated primarily by practical compassion from going into the profession, I do welcome this development as one way to get compassion back onto the agenda. Perhaps the research will be able to point us in directions which will allow nurses to nurse in ways that heighten both their sense of vocation to show compassion and their patients' sense that care is given with compassion. Can research 'prove' that compassionate care is more healing than dispassionate, objectivised care, I wonder?  Claire, like Jo Brand, always seemed to blend great intelligence and humour with tough compassion. 

The inaugural scholarship has been awarded to Barbara Schofield, consultant nurse for older people in the Calderdale and Huddersfield NHS Trust. She will study dignity and compassion in care. For further information, go to
http://www2.hud.ac.uk/hhs/chscr/Claire_Rayner_Scholarship.php

Assisted Dying.

Last night, Debbie Purdy spoke at the Legal, Medical, Clerical dinner in Harrogate. Debbie suffers from MS and campaigns for freedom from prosecution for relatives who help a loved one, at their request, to an assisted suicide. 92 people in Britain have helped a relative travel abroad to die and some have been charged on their return though as yet none have been prosecuted. Debbie views this as a matter of life and is, herself, full of life, asserting that she can only live her life fully if she knows that, should her pain become unbearble, she can ask for help to end her life and know that her husband will not be prosecuted or end up serving a prison sentence. She feels that, without this assurance, she would have to end her life before she wants to in order to be able to take it without physical assistance from her husband who may then be prosecuted. Most of us cannot even begin to imagine being in this position. Everyone who heard her speak was, I think, both struck by her wonderful liveliness and zest for living and moved by the poignancy of her plight. In 2009 Debbie took her case to the law lords and it was refered for appeal. The result? That the Director of Public Prosecutions was required to publish the facts and the circumstances that would be taken into account in the decision whether or not to prosecute someone for assisting a person in an act of suicide. As the law stands, anyone who is found guilty of 'aiding, abetting, counselling or procuring' the suicide of another can be sentenced to up to 14 years in prison.

Debbie's argument is that, because the suicide rate is relatively high among those with progressive debilitating diseases, more lives would be saved by removing prosecution for, particularly, counselling in connection with suicide. She claims that at present doctors, health care professionals and clergy are too constrained by the law and many will not even talk to patients about suicide. She believes therefore that people end their own lives who could in fact be reached and helped by counselling and an honest discussion about suicide. She pianted a vivid picture of the silence that meets those in great pain and fear about their desire to do something to relieve the intolerable situation they find themselves in.

There was an interesting discussion after her talk. This is an ethical dilemma which is truly beyond human wisdom to fathom. It is seemingly impossible to find a law that both protects from intolerable pain and protects from exploitation and abuse of the vulnerable. It is also very difficult to know when an individual has reached an irrevocable decision - there are huge risks of minds being changed and mistakes being made about someone's intentions. Even when there is something like a living will, it is often far from clear when a person has reached the point at which it should be enacted.

Like Debbie, like all of us, I am influenced by my own experience. I nursed for 9 years and I remember patients who clearly wanted to end their lives and who told relatives and staff that they could no longer bear the pain they were in on a daily basis for weeks and months. I know that in a few cases medicine does not have the capacity to control pain. I have suffered from a very painful condition (endometriosis) myself which can temporarily reduce you to feeling that you would do absolutely anything to escape the pain. But I also remember people who begged not to be rescusitated or who said they wanted to die and clearly meant it, only to move to another point in their disease where they fervently thanked God (or the medical staff) that they had not died. I have seen that people with chronic progressive disease, people with accute (very severe but not permanent) disease and frail and very ill elderly people have different vulnerabilities and need different kinds of help, care and protection. And who is to make judgements in all these cases? It seems to me that wherever the law comes down on the spectrum of preserving life at all costs or allowing or assisting death, mistakes will be made. We will not get it right in every case. Medics already have a variety of approaches to the impossibly difficult delineations  between not preserving life and allowing or assisting death. 
  
What I found very insightful in Debbie's talk was her insistance that doctors, nurses, counsellors, lawyers and clergy must be able to have honest conversations with patients about intolerable pain and other symptoms, about what suicide would involve and about how their disease will progress. There must be freedom to explore whatever the person wants to explore without fear of being reported and prosecuted. Some doctors seem to do this anyway. Others avoid the difficult area of what suicide would mean and the dreaded area of 'too much pain' because of where it might lead. Yet Debbie pointed out that being able to talk about these things was sometimes precisely what enabled people to want to live rather than die. I also agreed with Debbie that clarity in law about what is and what isn't going to lead to prosecution for relatives is important.

However, I think that the law has to maintain the utmost vigilance and there has to be the possibility of prosecution for any kind of coercion towards suicide. I also do not want to see the law changed in any way that requires medical staff to assist death directly; the notion that a doctor or nurse might under certain (even very controlled) circumstances deliberately end life changes the entire patient/medic relationship. It puts health care professionals in the position of making impossible judgements and puts patients in the position of not being able to trust the motives of those who should unconditionally be caring for them. Palliative care and more research into how to avoid prolonging life when this is not wanted seem to me to offer a way forward. However, even as I write this, I can think of patients I have nursed whose conditions and whose suffering make me question what I write. 

I come down in my own judgement in a place where the law errs on the side of stringent protection of life but is exercised in a way that allows for the greatest possible compassion and leniency for those who have been caught up in these terribly difficult places. There must also be extensive training and support for professionals who find themselves having to accompany patients on these kinds of journeys.Twenty five years after leaving nursing, I still have the names and fates of patients etched on my memory because they didn't have a good or easy ending no matter what we tried. Patients, relatives and staff have to be able to talk honestly to someone and even say, 'Perhaps we made a mistake, perhaps we didn't get it right, perhaps you didn't get it right for me,' and to know that there is humane understanding and forgiveness for the extreme places they find themselves in from time to time. 

A very sobering topic and not easy to know how to write about (or even whether to write). But Debbie communicated a love of life and her whole demeanour was that of someone living the gift of her life to the absolute fullest extent possible. And her message was, I think,  'please talk about it.'