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Cystitis can destroy lives

Argus title : Beware of this ‘minor’ illness

Just under a month ago, Olivia Crowther, 23, who studied English Literature at Sussex University and was planning a career in publishing, fell to her death from the Golden Gate Bridge.

Olivia left her London flat without telling her family and on Tuesday 24th June checked into a hotel in San Francisco. She was found by California Highway Patrol the next morning. It has emerged that prior to travel she had trawled suicide websites showing tall buildings and bridges.

Her parents are reported to be devastated. They said their daughter had no history of depression, describing her as “… a loving daughter who seemed to be making her way in the world.” They are struggling to understand what drove her to suicide.

Her uncle, Robert Leader, said the only unhappiness in her life was a nagging bladder problem – reported to be cystitis – which had afflicted her for a year and which doctors had failed to cure. There had been no indication it might drive her to kill herself. He said “It is a huge mystery and the only thing I can think of is that she had this health problem that became all-consuming for her and that was a constant nagging source of discomfort.”

Simon Davies studied with Olivia at Sussex University. He said: “.. she was a very clever girl and she never seemed unhappy. We often talked about the future and it seemed to me she’d go on to be successful.”

Her friend Zoey Monk worked with Olivia at SHE magazine. She said: “…. She was so well spoken and such a lovely girl. I would have never thought this would happen to her….”

Olivia was a beautiful young woman with everything to live for. Her family members are understandably angry that she was so readily able to access suicide websites which in effect showed her how to die. However, there is another source of concern here and that is the disease that caused her such torment.

Cystitis is a “minor” illness which is usually experienced by women and the elderly. As such it is often not taken seriously. Yet it can cause serious kidney infection, chronic pain, relationship breakdown and deep depression – and in the elderly, confusion akin to dementia.

Cystitis occurs when the normally sterile lower urinary tract is infected by bacteria and becomes irritated and inflamed. In 85% of cases bacterial infection is the cause – usually brought about by transfer of escherichia-coli (e-coli) from the bowel through the urethra into the bladder. It is very common in women because of the relatively short distance between the opening of the urethra and the anus and because the urethra is short and bacteria do not have to travel far to do damage.
Cystitis can easily be precipitated by sexual intercourse especially if there is bruising to the surrounding area (hence the term “honeymoon cystitis”). Once bacteria enter the bladder, they are normally removed through urination, however if bacteria multiply faster than they are removed infection results. This is why one of the simplest and most effective self-help techniques is to urinate immediately after intercourse.

The condition commonly affects sexually active adult women. In fact, almost all adult women will experience at least one attack. However, it may also occur in men, those who are not sexually active, catheter-users or children. Older adults are at particular risk.

The symptoms are a frequent need to urinate and a sharp, burning pain when doing so. Other possible symptoms include cloudy and sometimes bloody urine, backache, lower abdominal pain and fever. In elderly people, the most obvious symptom may be increased confusion.

It is true that many people who suffer from this complaint do not experience repeated or serious attacks. Nowadays proprietary brands of medicine, usually containing Potassium Citrate, are available over the counter. These can be used at the first sign of a symptom and often do the trick. However, for anyone who cannot afford the remedies, or who does not recognize the symptoms, it can be a very different story.

I vividly remember the excruciating pain I experienced the first time I had cystitis. After the lab results were returned the doctor commented with fascinated sympathy – and some macabre glee – that neither he nor the lab assistants had “ever seen such a virulent attack”. I paid dearly for it, because my kidneys were affected and after that I experienced repeated attacks. Each time I was given antibiotics, but was never taught the self help techniques which could have prevented the disease.

I recall one particularly unpleasant night attack. I had a high temperature and was bleeding and in great pain. In desperation I called an out of hours doctor to provide a prescription for antibiotics. The next day I reported this by telephone to the surgery only to have one of the receptionists comment in horror “You called out a doctor for cystitis!” I felt too ill and humiliated to object, but have thought about that ignorant and callous comment a great deal since poor Olivia died.

On one occasion, I was completely incapacitated after getting what my grandmother would have called a “chill on the kidneys” while boating on the Serpentine. My doctor poured considerable scorn on the idea that a “chill” could precipitate cystitis, saying that this was an old wives tale. Nonetheless, I discovered over time that a combination of dehydration and a chill across my back would almost always precipitate an attack. I learned that by drinking a great deal of water, keeping my lower back warm and taking a teaspoon of Potassium Citrate in water at the first sign of symptoms, I could completely avoid attacks.

Things changed for sufferers in the 1970s when Angela Kilmartin, herself a chronic cystitis sufferer, published her book “Understanding Cystitis”. It was part of a wave of publications about women’s health which sprang from the women’s movement of the time. These had in common deep scepticism about conventional medical practice and a commitment to prevention and self-help.

Kilmartin’s book became a bestseller. It emerged that thousands of women had suffered in silence from chronic cystitis and that there had been more than one cystitis-related suicide. At last, women began to realize that they were not just “making a fuss”, but were experiencing a significant and potentially serious health problem.

Self-help techniques began to be well publicised and circulated, first by women themselves and then by some doctors. Cystitis sufferers began to realize that repeated doses of antibiotics were causing chronic thrush which in its turn was causing re-infection. Women’s demand for better treatment eventually resulted in proprietary brands of medication for cystitis – and thrush – becoming available without prescription. However, it seems that in these so called post-feminist days, essential preventative techniques are being forgotten.

Women’s magazines, which in the 1970s and even the 1980s would have publicised such techniques, now seem more concerned with women’s sexual performance than with their health. Schools sex education programmes certainly don’t provide information. And yet, given the early sexual activity of so many young girls, infection is likely to be on the increase.

Cystitis is a sordid mean little disease. It doesn’t kill – at least not directly – but it can destroy lives. We will probably never know exactly what drove Olivia Crowther to her tragic death. All we can do is to try to understand her desperation and hope that as she jumped from that beautiful bridge, she felt an end to pain – and that for just one brief moment she thought she was flying.

Contact the Samaritans on 0845 7909090.

NOTE:

Effective preventative techniques are simple:
• drink 6-8 glasses of water a day and one glass of cranberry juice;
• urinate frequently (and immediately after sexual intercourse);
• keep scrupulously clean; and wipe from front to back after a bowel movement

If an attack occurs use proprietary treatments or get help from a doctor.

Alzheimer’s Awareness Week

Argus title : Struggle to keep a vital service going

In June last year I wrote a tribute to Neil McArthur, the late Manager of the Brighton Area Branch of the Alzheimer’s Society, who had died on 19th May.

Amongst other things I wrote that Neil “..was particularly concerned about the needs of people with early onset dementia and their carers, realising the urgent need for good advice and support at an early stage.” I mentioned that in 1999 Neil helped set up the Towner Club, a day service for younger people with dementia, the first of its kind in the southern area.

A year on, I met with Alan Wright, Neil’s successor, to talk about how the work of the branch is progressing. He has been in post for just 7 months. Appropriately, we met at the Towner Club.

Like Neil, Alan is quietly spoken and unassuming, but very dedicated. He too is passionate about the needs of people with early-onset dementia, recognising that early diagnosis is essential if proper services are to be put in place.

He said: “A huge part of this job is about administration and fundraising, but the highlight of my working week is contact with service users. I love coming to the Towner Club, spending time with members and engaging with them.

The Towner Club meets on Tuesdays at 62 St James Street, in the heart of Kemptown. Its members, all aged between 35 and 65, have been diagnosed with one of the many forms of dementia, including Alzheimer’s. Specialist support is provided by qualified staff, including a mental health nurse and an occupational therapist, along with support workers and volunteers from the Alzheimer’s Society. The Club is a member-led service and offers a range of individual and group activities that allow members to develop new skills and to retain existing ones.

Alan said: “The Club is an essential resource for people living with early onset dementia but, despite being recognised as a model of excellent practice, it is a constant financial struggle to keep the Club running since statutory funding for such initiatives is extremely limited.”

Receiving a diagnosis of dementia can be shattering for the individual concerned and for family members. This is especially true when onset is early. The person with dementia may be a major breadwinner and still have children to support. Typically, they will not have been coping with their job and may be in deep financial difficulty, especially if they have been running their own business.

All too often people make contact with the Society very late, and frequently not until they are in crisis. The Society is keen to make contact at an early stage in order to provide support and advice before there are major difficulties. It is all too aware that numbers diagnosed with dementia are set to massively increase over the next decade.
Alan explained how the other work of the Society is developing : “Until now, the Brighton & Hove branch of the Alzheimer’s Society has depended heavily on people accessing the carer support service via word of mouth, local advertising and a single drop-in facility in Hove. However, we recognise that in order to reach many more of those people affected by dementia, the Society must develop a wider presence across the whole city. So we’re aiming to strengthen links with health professionals and engage in increased outreach work.”

The Alzheimer’s Society has to leave its Hove premises this month and has used this opportunity to restructure and improve access to the Information & Support Service. In addition to regular drop-ins at a number of different locations around the city, it has also set up a popular Thursday morning “Friendship Café” at a city centre venue.

New Information and Support Sessions have also been set up alongside clinics in the Nevill, Brighton General and Aldrington Day Hospitals. Alan said “The opportunity to engage with individuals immediately after a diagnosis of dementia will significantly improve uptake of support services.”

The Society is committed to support both individuals with dementia and their carers. There is currently a well-established Relief Care Scheme which works with 80 families. This provides respite for carers, allowing them to rest or go shopping or even to have a leisurely bath – knowing that the person they care for is safe. The scheme is no mere “sitting service”. The trained relief carers work with each individual to offer personalised and appropriately stimulating activities, such as memory work, reading, art work or baking.

There is an existing Carer Support caseload of approximately 65 people – currently delivered by 2 staff members. However, the new community ventures and improved access to the Society’s services are expected to cause significant growth in caseloads. during the next twelve months.

As a consequence, the Society is soon to appoint an additional Support Worker. A key part of this worker’s role will be to increase the number of early interventions, working with a much wider cross section of the Brighton & Hove community, including Black and minority ethnic groups. The post is funded for one year only, but the branch will be fundraising to continue the post.

I put it to Alan that dementia services have historically been viewed as “Cinderella services”. He pointed out that services for early-onset dementia are particularly poorly funded and warned that the future of day centre provision is currently under review at a local and national level.

He said “The Towner Club’s innovative work has received many accolades, but it has insufficient statutory funding. It’s wrong that we should have to fundraise for core elements of a service, such as salaries and rents.” He warned that a strategy of maintaining people in their homes can only work if they have day services available to them.
Alan added “We’d also like to expand the Towner Club. We are also very conscious that there are no dedicated services at all for younger people for whom the disease has progressed. Often all that is available to them is to be placed in residential and day services for elderly people, for which they are not suited and often find frustrating and undignified. Their carers are in a terrible situation because specialist support services are unavailable just at a time when management of the disease is becoming more difficult.”

The Alzheimer’s Society’s annual Dementia Awareness Week takes place from 6th – 13th July. The focus here in Brighton and Hove will be on raising awareness and fundraising for the Towner Club.

Alan Wright said: “The point is to raise public awareness, particularly of early onset dementia and how this affects people’s lives. Diagnosis can be devastating and people can believe there is no hope. “

He added “Our objective as a Society is to help people to live with dementia. We want people to know that there is a lot of life left to enjoy – but people need support to be able to do this.”

Contact the Alzheimer’s Society on 01273 726266.