Monthly Archives: May 2011

Summertime skin and what's hot

New products keep your skin moist and glowing

 

It looks like summer is really here, and skincare routines need updating!

Anyone who is on drugs (medicinal ones that is), can’t afford to relax for one moment.  Even in summer drugs are still churning up nasty rough patches, losing moisture and producing wrinkles, unless we continue to zap them.

So the cleanse, tone and moisturise routine is  still important – and here are some new products that will help lift your skincare and give you lots of new benefits, because good skincare is constantly evolving and being updated.

As so many of us shop online today, I have included current cheapest price on the net, but can’t guarantee they will stay – although they should.

If  ‘Googling’ a company or product, don’t forget that many are international, so UK addresses will usually end in co.uk, rather than .com – which can lead to US dollar prices and a hefty postage bill!

Cleansing

Anyone who watches the QVC Channel knows what a boon online shopping is when you are stuck at home.

The channel are now promoting ARK skincare, who have a brilliant cleanser which they call ‘skin clear cleanser’.  It definitely wakes up skin, and is so easy to use:  just one  drop smoothed over your face, then rinse off.

 

Toner

I love the Clarins products, and currently am using the Extra-Comfort Toning Lotion.

No nasties, it is alcohol-free so doesn’t sting, is very gentle, and lasts and last  –

at a gentle price online of £10.

 

Eye Care

Winter often leaves us with fine lines around the eyes, not helped by drug-induced dry, dry skin.  I have been trying out two new creams – one under the right and the other the left.  And I have to say that the one I am using on the left-hand side is streets better:  it’s Augen, a product that QVC are about to launch, so am waiting for price.  It’s way ahead of a Japanese product which sells at £80 – so if you have fine lines ask QVC for price and I bet it’s lower than the £80 product.

Serums

Serums are the success story of skincare today,

and I am using Elemis’s Visible Brilliance every morning.

Most serums are to be used at night, but this is light enough to be worn during the daytime, so helps give dried-out skins a double whammy of TLC.

When using, they should be smoothed or patted on after the toner, and before you use a moisturiser or cream.  Cheapest price online £35.

At night-time I prefer to use an oil, and Living Nature has a brilliant Radiance Night Oil.  Not only does one wake up with a gorgeous smooth skin, but there is no oily patch on the pillow.

This is a tiny little bottle, but a minuscule amount goes a long, long way and packs a real punch when it comes to moisturising one’s face .  £44.45

Moisturiser

Final layer should be a cream;  either a light day cream, possibly one with an SPF factor of at least 30 if you are going out in the sun, or a rich one for night-time.

Because drugs try their best to ruin my skin, I believe in the double-whammy principle:  a moisturiser AND a cream with an SPF factor just before I go out.

Avene are a French company noted for skincare.  They have an extremely rich compensating cream which I use every morning, and although it is rich, it sinks in and protects my skin all day.  In France Avene have a medical treatment spa which is noted for its skincare;  (I have been told that NHS patients have managed to have funded  treatments paid for there).  £16.50.

At night, I use Clinique Comfort on Call ‘relief cream’, which seems to repair my skin overnight and leaves it well moisturised.    You can use this all day, especially if drugs have played havoc with your skin, and you want to give it a boost.  £35.

 

 

 

 

Skin protection

Elsewhere I go in to SPFs etc., but you should be looking for a minimum SPF 30 to wear outdoors all summer long, even on days when the sky is overcast.

One of my favourite products is Clinique’s Super City Block.  It’s oil-free, which means it doesn’t slide off during the day, and not only protects my face from sun AND pollution, but also leaves my skin beautifully soft all day long.

It’s slightly tinted, and is SPF 40   £15.50.

 

Fake Tan that doesn’t look fake

The media is full of photos of the Middleton family, especially the females, and even more especially their legs.  Look carefully, and you will see that they are generally tanned, which makes them look even more gorgeous!  Having a light tan makes legs look slimmer, too.

I want to look tanned, without the dreadful leathery skin, so have been investigating the newest ‘fake’ tan, which will help slim down legs, and have been using a new product, St. Moriz (sic).

This is fake tanning mousse is brilliant on my skin.      No streaks, no hard lines, it glides on and gives me a very realistic tan effect without having to wait hours.

Only thing to watch is the mousse is very light, so make sure your hand is steady and you don’t flick it around.   And it doesn’t smell (for some reason my skin used to smell awful with other fake tans – probably aided by the drugs I am on).

I couldn’t believe how smoothly St. Moriz glided on, and the colour stays for several days. I use it about once a week now, unless I want a deeper tan, in which case I put it on two or three times a week.  Best to exfoliate and moisturise beforehand, then it looks even better, and of course wash your hands after applying.  £4.99 .

And now comes St.Moriz Instant Self-Tanning Lotion, for those of you who prefer this type of application.  I have been using both mousse and lotion;  they are equally brilliant, and give a really natural-looking tan.

WARNING – fake tans generally do NOT provide sun protection.    You will need to slap on an SPF product afterwards:  look under SKIN FACTS category on this site.

And to finish off the look, St. Moriz now makes Bronzing Powders.  You brush these onto your face (no need for foundation or powder) and these give you a healthy, ‘sunkissed’ look.  I tried this out for the first time at a press party, and other journos were coming up and saying “you do look well” – two even wanted me to email them withe name of the Bronzer.  So when journos actually ASK for info from another journo, you know you are on to something good.  I am using the Light Bronzer, but there is a darker one too for when you get browner.

Incidentally this is useful for shading, as well as giving a shimmer, so I shall use it in the winter to give me a glow, and to add as a blusher.

Living Nature has come up with a range of lipsticks;  I particularly like Summer Rain and Coral Sea.  It is far better to go for coral and deep pink tones,  which these are, and are much more flattering to our skins.  They last (even when licking an ice-cream) and friends say ‘you do look well’ .Beware though!

Beward fashionable dark shades;  they  can make you look really washed out.  Our skins suffer from drug side effects, and we often look paler than before.  Slap on vampire black, and you realy do look like you are ill!

N. B. These summer products are generally cheaper than the products I recommend for winter;  this is because our skins don’t need quite as much protection from the harsh winds during the cold season.

However, if you are going to go sailing then go back to using ‘winter’ creams at night, and slap on the day creams several times a day.  If you are out on the water, where sun’s rays are magnified, and wind is strong, then a once-a-day slather is NOT enough.  It needs to be every two-three hours.

 

 

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From Incurable to Incredible

“From Incurable to Incredible”

has been named a finalist in the Health: Cancer category of the International Book Awards!

The book features stories of  27 cancer survivors who were given a terminal diagnosis, but shocked everyone by thriving years past their prognoses.  These survivors have different cancers and circumstances, but share two things: a poor prognosis and incredible drive to overcome it.

Telling their stories are:

Doug Ulman, president and CEO of the Lance Armstrong Foundation and three-time survivor, who shares his story and how LAF helps and continues to assist cancer survivors.
Buzz Sheffield, whose faith and service has kept him healthy and active five years after he was told he had three months to live.

Dave Massey, who in 1986 and again in 1997, was given six months to live. Today, he runs marathons and speaks at cancer centers nationwide to spread his message of hope.

Paul Falk, diagnosed 23 years ago at age 9 with acute leukemia, describes how his doctors wondered if he would survive two weeks. A year later, he wowed everyone by becoming the personal guest of then Vice President George H.W. Bush.
Steve Scott, a Stage IV colon cancer survivor who was told by five doctors he was going to die. Five years later, he is cancer-free and embarking on a new exciting new life.

Cathy Wolfe, who was diagnosed with ovarian cancer while pregnant with her second child. She was determined to have her baby despite overwhelming dangers and obstacles. Today she and her teenage son are living proof her determination was worth it.

Paperback versions available for purchase on this site, BarnesandNoble.com, select bookstores and medical center gift shops.
Ten percent of the author’s proceeds will go to the Lance Armstrong Foundation

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Obama and Cameron hold BBQ, but Cancer experts say watch it

WELLINGTON, NEW ZEALAND - JANUARY 18:  HRH Pri...

Image by Getty Images via @daylife

Chargrilled meat has its dangers

It’s BBQ season :

Obama and Cameron had a big BBQ in Downing Street garden,

Prince William was photographed in his apron in New Zealand –

However, before you get the charcoal fired up, there are warnings (there would be, wouldn’t there?)

World Cancer Research Fund (WCRF) advises people to limit their intake of red meats such as beef, pork and lamb, and to avoid processed meat such as ham and salami altogether (so no ham salad as a side dish).

The charity kickstarted a global debate in 2007 when it published a study which identified meat as a risk factor for a number of different forms of cancer.

Now more research comes out blaming HCAs – Heterocyclic amines which are chemicals found when grilling meat directly over a high flame.  Studies have found this gave animals cancer – so far jury out re humans.  But best to avoid them.

Now Cancer Research UK adds to message

Hazel Nunn, a senior health information officer at Cancer Research UK, says:

“With barbeque season just round the corner, this is a timely reminder that …. how much red and processed meat and fibre you eat can all have a bearing on your risk of bowel cancer.”

Authorities are divided about dangers from chargrilled meat, but latest guidelines advise

1. Turn burgers, chops, sausages etc. frequently.  Turning burgers once a minute and cooking over lower heat reduces HCAs and kills potentially deadly E. coli bacteria, according to a new study at Lawrence Livermore National Laboratory in California. (HCA = heterocyclic amines are chemicals formed when grilling mmat directly over open flame, and probably might cause cancer in animals).

2. Use the right marinade. Slash HCAs by marinating raw meat in a thin, very liquid sauce for at least 10 minutes, or more to taste. The Cancer Research Center of Hawaii found that a teriyaki marinade reduced HCAs 67%; a turmeric-garlic sauce, 50%. The key is to use a watery sauce: When a thick, concentrated commercial barbecue sauce was used, it actually tripled HCAs. So dilute thick sauces.

3. Add garlic and herbs. In tests, garlic, rosemary and sage reduced HCAs. Mix them into burgers or use them in marinades. Antioxidants in citrus fruits also block HCAs.

4. Use common-sense.  The longer meat is cooked at high temperatures (grilling, broiling, frying) the more HCAs are produced. But you need to ensure meat and especially chicken is cooked right through.  Always cook burgers, pork and poultry well-done to avoid food poisoning, but avoid burnt food.  If you have a meat thermometer. make sure a burger’s internal temperature reaches 160 degrees Fahrenheit, needed to deactivate E. coli. Just because meat is brown doesn’t mean it’s thoroughly cooked.

5.  Grill “green.” Fruits and vegetables don’t contain creatine, the animal protein needed to make HCAs. Corn on the cob, pineapple and peppers are great grilled. Also, eating fruits, vegetables and green salads along with barbecued meat lessens the cancer hazard.

WCRF-funded scientists at Imperial College London led by Dr Teresa Norat studied 263 research papers that have come out since then looking at the role of diet, weight and physical activity in bowel cancer. An independent panel of leading cancer experts then reviewed their conclusions. “For red and processed meat, findings of 10 new studies were added to the 14 analysed as part of the 2007 report. The panel confirmed that there is convincing evidence that both red and processed meat increase bowel cancer risk,” said the report .

“WCRF recommends that people limit consumption to 500g (cooked weight) of red meat a week – roughly the equivalent of five or six medium portions of roast beef, lamb or pork – and avoid processed meat,” it added. About 36,000 Britons a develop bowel cancer every year, and some 16,500 die from it. It is the UK’s second biggest cancer killer after lung cancer.

About 17,000 cases a year (43%) could be prevented if people ate less meat and more fibre, drank less, maintained a healthy weight and kept active, the WCRF says.

People should cut down to 70g.  meat per serving.  A 70g serving could be a lamb chop or two standard beef burgers.

WCRF’s review has also firmed up from “probable” to “convincing” its view of the protection against bowel cancer afforded by eating foods containing fibre, such as wholegrains, pulses, fruit and vegetables.

However, Chris Lamb, a spokesman for England’s pig, beef and lamb farmers, said: “Average consumption has been in or around 500g a week for a few years. The vast majority of consumers aren’t exceeding this and don’t have to worry about [this]”, he said.

Consumers eat and enjoy meat as part of a balanced diet, and meat plays a valuable part in that balanced diet”, said Lamb. “If you eat or drink anything in excess it’s a danger. Therefore, if you can pick on meat in order to get headlines, then you aren’t actually helping consumers.”

Professor Dame Sally Davies, the chief medical officer for England, said red meat can form part of a healthy, balanced diet. “It is a good source of protein and vitamins and minerals, such as iron, selenium, zinc and B vitamins,” she said, “but people who eat a lot of red and processed meat should consider cutting down. The occasional steak or extra few slices of lamb is fine but regularly eating a lot could increase your risk of bowel cancer.”

So message is throw a few more corn cobs on the barbie.

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How to get NHS to pay for treatment in Europe

EU member states

Image via Wikipedia

Implications of the recent EU Directive on cross-border healthcare

EU law clarifying the right of patients to receive healthcare in  EUmember states adopted

Directive will extend patient choice for medical treatment beyond national borders….

but will take some time to take effect, particularly as in UK the outcome will certainly be a significant amount of patients wanting to be treated abroad – whereas other EU countries know that they could gain income from NHS patients.

What it’s all about

For some time UK patients, with enough time and patience, were occasionally able to get their local PCT to fund treatment abroad.  The EU got involved, and now there has come a Directive which means that it should be easier for those patients who can persuade their GPs that they would receive better, more up-to-date treatment in certain European countries, to receive NHS funding, now they have won the right to ask for treatment to be funded by NHS.

Hoever, be aware you will still have to find travelling expenses, and possibly accommodation (except in certain circumstances).

This Directive has come about because, as the EU says ……. the landmark “Watts” case which concerned the NHS directly.   In 2003 Mrs Watts, a UK patient who had gone to France to seek treatment to avoid a long waiting time in the NHS, and had then sought reimbursement of the cost of her treatment from her local primary care trust, had her case referred to the European Court of Justice.  In 2006 this Court ruled that she was entitled to the treatment and that the NHS should pay.

Now, UK cancer patients in particular can ask for better treatment in Europe to be funded by the NHS.  BUT – first you will have to negotiate the mine-field of NHS commissioning, and commissioners are not going to open the purse-strings very readily.

Key points

  1. The right of patients to receive healthcare in another EU member state, and to be reimbursed by their country’s healthcare
  2. System has been established by several decisions of the European Court of Justice.The recently adopted EU Directive will clarify how this right is implemented in practice.
  3. Many questions arise on how the rules will be implemented on the ground. The NHS will be helped by organisations to understand them and to ensure that their views are heard throughout the implementation process.

Key provisions in the EU Directive

The rationale underpinning the Directive is that it should be as easy as possible for patients who want to access healthcare abroad to do so, subject to the same conditions which apply when accessing treatment at home.                         (In practice this means your GP must help you to go abroad for treatment, if there is a valid reason).

Therefore, as well as restating the existing rights established by the European Court of Justice, the Directive builds on them to provide clarity on the rules and processes applicable for patients who want to seek healthcare abroad.

Alongside this, the Directive encourages cooperation between member states in a number of areas related to cross-border healthcare, such as:
• the recognition of medical prescriptions filled out in other member states  (in practice I have found this generally works well already)
• cooperation between providers, especially in the area of rare diseases
• the use of e-health for the transfer of patients’ records between countries  (bit difficult for us – I wouldn’t trust this to NHS at the moment!)
• the assessment of health technologies.

The provisions in the Directive of key importance from an NHS are:

  • Determining what treatment a patient can receive
  • The Directive clarifies the rights that patients have to access healthcare in another European country and to receive reimbursement towards the costs
  • quality and safety standards will apply, and what to do if anything goes wrong.
  • It will also end the uncertainty that commissioners currently face over decisions about what care patients can receive abroad, while allowing the NHS to maintain control over patients’ entitlements.

On the provider side, the rules will offer opportunities to increase income by providing services to EU patients when capacity allows.

It is worthwhile noting that,alongside this new Directive, a separate EU mechanism for patients to obtain planned
treatment in another European country at the expense of their home healthcare system already exists under longstanding EU regulations on the coordination of social security schemes (the ‘S2 referral’ – formerly known as
E112). The difference betweenthe two routes to cross-border healthcare is not always clear cut.

In principle, the Regulation on the coordination of social security schemes governs the following situations:

  • health cover of UK nationals who are resident abroad;
  • commissioners’ decisions to refer  patients to another EU country,
  • for example, if certain treatment cannot be provided in the UK or in case of ‘undue delay’; as well aspatients needing emergency care during a stay abroad.

The new Directive, reflecting freedom of movement principles under the EU Treaty, goes further.
It provides a legal framework to apply to situations where a patient takes a personal decision to travel abroad to receive healthcare.
Taken together, these court cases have established that patients have certain rights in relation to cross-border healthcare.
However, there were a number of uncertainties around the case law which made it confusing for patients and difficult for health systems to implement in practice. For example, it was not clear when or if health systems could apply
a system of prior authorisation or what levels of reimbursement should apply. The proposed Directive sought to clarify the  situation, for the benefit of both patients and those managing health services.

After a lengthy EU decision making process, the Directive was formally adopted at EU level in March 2011. The NHS European Office engaged significantly with  the proposals throughout the process, briefing EU decision makers on NHS views and ensuring that the rules will not impact negatively on the NHS.
The NHS European Office says, “thanks to our extensive lobbyingwe are pleased with the agreed text. The Directive will help patients to make informed decisions about cross-border healthcare by providing clarity on matters such as:

  • what reimbursements they will be eligible for
  • what costs they will have to meet themselves

Patient choice beyond borders cannot be made conditional on the use of this system and patients will still be entitled to seek reimbursements for treatment that they have already received.

Determining costs and the level of reimbursement

Under the Directive, patients can seek any healthcare (including private care) in another European country that is th same as, or equivalent to, a service that would have been provided to the patient under the NHS.

The Directive allows for two possible systems of payment of crossborder healthcare costs:

  1. either patients pay up-front and are then reimbursed by their local commissioners;
  2. or commissioners pay the provider abroad directly.

In any event, commissioners will not be required to pay more than the cost of that treatment if provided by the NHS.

However, it is more than likely that the cost may well be LESS – hospitals and health services in Europe may not be as s greedy as the NHS.  e.g.  I needed a DXA Scan – in Italy this could have cost me £40 in a modern unit;  in London my insurers would pay the NHS £120 for a scan in a scruffy basement room.

NOTES

  1. there is no requirement for commissioners to pay travel, accommodation or other expenses that would not be covered if treatment were provided in the home country. This means that the patient would normally need to cover these costs, as well as any difference in the cost of their treatment, themselves.
  2. Warning!  You may not be allowed to travel by air, and if you do, you will be sensible to pay for Business Class travel NOT go by budget airline.
  3. Nevertheless, commissioners may decide to pay additional related costs, such as accommodation and travel costs, for individual patients’healthcare.  Prior authorisation is only possible for healthcare which is subject to planning requirements and which involves at least one night in hospital, or requires the use of highly specialised and cost-intensive medical equipment.
  4. Authorisation can only be refused in limited circumstances listed in the Directive and decisions have to be taken in an objective and non-discriminatory manner. For example, authorisation could be refused when the patient would be exposed to a very high safety risk that cannot be regarded as acceptable.
  5. It is important to emphasise that authorisation cannot be refused where a patient is experiencing ‘undue delay’ in receiving treatment under the NHS. While there is no formal definition of ‘undue delay’, the European Court has stressed that judgments must be based on a clinical assessment of what is a medically acceptable period for the individual clinical circumstances of the patient, and that this assessment needs to be kept under review while the patient is waiting for treatment.
  6. Significantly, the European Court has said that offering treatment within a national waiting time target does not necessarily avoid ‘undue delay’.
  7. For other types of healthcare, a voluntary system of prior notification can be introduced to encourage patients to inform their commissioners of their intention to receive healthcare abroad and to discuss what reimbursements they will be entitled to. It should be noted, however, that reimbursement of treatment that the patient would have been entitled to at home. It confirms that it is always the home health system that decides what healthcare is available to its citizens, regardless of whether they are treated at home or abroad.
  8. It also recognises that patients wishing to receive cross-border healthcare can be subject to the same ‘formalities’ as patients seeking healthcare in the NHS. This would include, for example, requiring that a patient seeks GP referral to access specialist care. This provision is particularly important for the NHS which, as opposed to social insurance systems, does not have a basket of healthcare to which all patients are entitled, but rather makes decisions on eligibility locally, taking into account the circumstances of individual patients.
  9. N.B.  Talking to officials this could well be the stumbling block for UK patients seeking care abroad. Commissioners have told me that if a patient seeks treatment abroad (perhaps for a new procedure that NHS hospitals don’t offer) persmission could be refused as procedure is not available in Britain.   This seems to negate the object of going abroad, to receive better treatment than one can receive in UK.
  10. Authorising patients to receive treatment abroad,  The Directive allows member states the option of introducing
    a system of prior authorisation for patients seeking cross-border ‘Commissioners will not be required to pay more than the cost of that treatment if provided by the NHS.
  11. Authorisation cannot be refused where a patient is experiencing ‘undue delay’ in receiving treatment under the NHS.

Significantly, the European Court has said that offering treatment within a national waiting time target does not necessarily avoid ‘undue delay’’

Key points for commissioners
• NHS patients have the right to seek in another European country any healthcare that they would have received under the NHS and to be reimbursed by their commissioner up to the amount that their treatment would have cost the NHS to provide.
• The patient pays the difference if care abroad is more expensive. The patient would also normally have to cover travel and other costs, unless their commissioner decides to cover these additional costs on an individual basis.
• The Directive does not give NHS patients rights to reimbursement towards the cost of treatment that they would not have received under the NHS.
• Patients seeking treatment abroad can be made subject to the same conditions that apply when accessing treatment under the NHS. For example, a patient who wanted to see a specialist abroad would still need GP referral.
• Prior authorisation systems (where a patient makes a request to be treated abroad before they obtain treatment) may only be introduced for healthcare which is subject to planning requirements and which involves at least one night in hospital, or requires the use of highly specialised and cost-intensive medical equipment.
• Prior authorisation cannot be refused if a patient is experiencing (based on their individual circumstances) ‘undue delay’ in receiving NHS care.
• Commissioners have a duty to ensure that patients who receive crossborder healthcare can have access to follow-up healthcare if and as required when they travel back to the UK.
• Commissioners may decide to pay directly for healthcare in another European country, if this would benefit the patient.  This would not apply to treatment provided in other European countries, even where this treatment was provided to NHS patients. Instead, it would be the provider country’s equivalent system for ensuring quality and
safety that would apply. Similarly, NHS hospitals treating patients from other EU countries would do so to NHS standards.

Quality and safety standards
The Directive confirms that the legislation and requirements that apply on matters such as quality, safety and liability are those of the country where the healthcare is being provided. This means that the standards set by the Care Quality Commission.

As the NHS is based on a system where the vast majority of healthcare is free at the point of use, one of the biggest issues around cross-border healthcare is how to determine domestic costs. The text states that each country should have a transparent mechanism for calculating the level of reimbursement a patient is entitled to if they receive healthcare abroad, but the detail of this is left for each country to determine.

For healthcare which is not covered by an NHS tariff, defining the level of reimbursement could be particularly challenging when prices are set by commissioners or subject to negotiations between commissioners and providers, and therefore subject to significant local variations. Furthermore, a tariff may cover a package of care, rather than a simple procedure, and therefore costs may need to be ‘unbundled’ if a patient receives a different package of care in
another EU country.

Regarding the costs to be charged to incoming patients, the Directive states that providers apply the same tariffs they apply to domestic patients in a comparable medical situation or, when this is not possible, a price calculated on
the basis of objective and nondiscriminatory criteria. ‘In the event that waiting times were to increase for certain
treatments under the NHS, we could expect a larger number of patients seeking cross-border healthcare going forward’

Patient choice beyond borders:  ‘At a time when the NHS is moving to a system allowing for greater variation at local level on which treatments patients are entitled to receive, a key issue with the implementation of the EU rules will be to ensure that commissioners have a clear ‘list’ of which types of healthcare they allow (or do not allow) their patients to receive’

Information to patients on cross-border healthcare :  The Directive requires each member state to make information
about travelling for healthcare easily available to interested patients, including by setting up one or more national contact points for cross-border healthcare to assist both incoming and outgoing patients.

The role of national contact points is to provide patients, on request, with information on their entitlements to healthcare or procedures for accessing and determining entitlements. They will also be required to provide
information on the quality and safety standards that apply in their country and a list of the providers which are subject to them.

Furthermore, they should provide analysis of implications for commissioners.  Whilst it is impossible to predict
how patterns of cross-border healthcare will change in the future, it is broadly recognised that most patients prefer to be treated as close as possible to home and therefore, in principle, we do not anticipate a large expansion in the volume of cross-border healthcare within the framework of the Directive.

Nevertheless, it should be emphasised that one of the main reasons given by patients for seeking cross-border healthcare is the opportunity to receive treatment more quickly. Therefore, in the event that waiting times
were to increase for certain treatments under the NHS, we could expect a larger number of patients seeking cross-border healthcare going forward.

As patients may only receive reimbursement for healthcare abroad that they are entitled to receive under the NHS, at a cost which is not higher than the NHS cost, cross-border healthcare is not expected, in principle, to have major implications for NHS budgets. Nevertheless, as authorisation cannot be refused in cases of ‘undue delay’, there
could be some implications in terms of commissioners’ ability to plan and prioritise. This could, in turn, have implications for health inequalities by allowing certain patients to receive treatment more quickly than patients who
are in greater medical need.

Another challenge for commissioners relates to determining domestic prices for healthcare, especially for those procedures which are not covered by a tariff and are subject to significant local variations.

On the positive side, the Directive will reduce the uncertainty commissioners currently have on what rights NHS patients have to receive treatment abroad and how to handle requests from patients for cross-border healthcare.

As the NHS is expected to move to a system allowing for greater variation at local level on which treatments patients are entitled to receive, a key issue with the implementation of the EU rules will be to ensure that commissioners
have a clear ‘list’ of which types of healthcare they allow (or do not allow) their patients to receive. This will be crucial to avoid uncertainty for both commissioners and patients, and to reduce the risk of legal challenges from patients
trying to access treatments abroad which are not routinely available under the NHS.

At a time when the UK Government has put forward proposals to extend patient choice and to diversify providers in the healthcare market, the Directive will have the effect of extending patient choice beyond national borders.
It should be emphasised that patients will have the right to access treatment from any healthcare providers abroad,
including private sector providers.

Patient choice beyond borders :  ‘The proposed removal of the private patient income cap, which currently reduces the ability of some foundation trusts to treat a greater number of non-NHS patients, will allow these trusts to take full
advantage of the opportunities emerging from the EU rules’ ‘In the current economic climate, NHS trusts could
be interested in exploring opportunities to provide health services to European patients to diversify their income’
information on liabilities and complaint procedures in the event that the patient suffers harm.

Cooperation between providers across Europe :  The Directive seeks to promote cooperation between providers and centres of expertise through the development of ‘European reference networks’, notably in the area of rare diseases.  Hurrah!  At last Cameron and Lansley’s mantras “health care is better in Europe” are becoming boring as they DON’T DO anything.  This way, Patients can demand that something is done t  bring treatment, particularly for cancer, up to European standards.  Why should be have to go abroad to access their superior treatment?  Why shouldn’t UK cancer patients have same life expectancy as Europeans post cancer?

These networks will concentrate knowledge in medical domains where expertise is rare and foster progress in the diagnosis and treatment of rare conditions.

The European Commission will develop a methodology for the setting up and operation of these networks in the run-up to the implementation of the Directive. We will monitor this process and contribute NHS views to maximise
the opportunities for NHS trusts.

The briefing notes state:  It should also be emphasised that NHS tariffs are often higher than tariffs applied in other member states and that this could impact on the ability of NHS trusts to ‘attract’ EU patients.

Next steps
The Directive is the first genuine example of EU legislation specifically in the area of healthcare services.

The information above has been kindly supplied by the European Office of the NHS Confederation.

CONTACTS

Email european.office@nhsconfed.org
http://www.nhsconfed.org/europe
Further copies of the notes above or alternative formats can be requested from:
Tel 0870 444 5841 Email publications@nhsconfed.org
or visit http://www.nhsconfed.org/publications
The NHS Confederation is a Registered Charity no: 1090329.
EUR01401
OR/  if having problems accessing treatment, probably best person to help is your MEP.
The NHS European Office
The NHS European Office has been established to represent NHS organisations in England to EU decisionmakers.
The office is funded by the strategic health authorities and is part of the NHS Confederation. EU policy
and legislation have an increasing impact on the NHS as a provider and commissioner of healthcare, as a
business and as a major employer in the EU.
Our work includes:
• monitoring EU developments which have an impact on the NHS
• informing NHS organisations of EU affairs
• promoting the priorities and interests of the NHS to European institutions
• advising NHS organisations of EU funding opportunities.
To find out more about us, and how you can engage in our work to represent the NHS in Europe,
visit http://www.nhsconfed.org/europe or contact european.office@nhsconfed.org
References
1. Regulation EC 883/2004, which repealed Regulation 1408/1971.
2. The NHS (Reimbursement of the Costs of EEA Treatment) Regulations 2010 – S.I. 2010 No.915.
The NHS (Reimbursement of the Costs of EEA Treatment) (England) Directions 2010.

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Cancer Networks saved – thanks to Patient Power

Macmillan Cancer Support Logo

Image via Wikipedia

Keep up good work and follow Macmillan’s efforts

Behind the scenes Cameron is not happy with his Health Minister.

According to Dr. Gerada, of the RCGPs, quoted in The Guardian; Cameron is ‘siding’ with Clegg.

However, it can’t be good for the NHS to have a Civil War raging – in front of the public or behind the scenes.  No-one would deny that the NHS needs an overhaul, but sane people would say go ‘softly, softly’.  See what works in one area, before rolling this out across England.

But in the meantime, La La Lansley the over-zealous bull is fighting not only the public, but also his Whitehall colleagues, and the NHS is lurching from one crisis to another.

Good News is  People Power is winning; small victories at first, but signs are they are increasing.

Latest ‘victory’ for common sense has come from Macmillan’s efforts.

Andrea Shufflebotham says, “The Government  threatened to pull funding for all cancer networks. These are networks of cancer clinicians who advise commissioners about cancer services across areas, to try and limit postcode lottery”.

As Andrea says, “when a cancer network works properly this means you don’t get the postcode lottery”.

As someone who was told by her NHS GP “I don’t know anything about cancer”, I can see the practical need for cancer networks.  The mind boggles at GPs trying to commission our cancer services, when they haven’t a clue what they are ordering.

Macmillan was really up in arms about it, because GPs have never commissioned cancer care before, and would be in even more need than previous commissioners.” We’ve been lobbying hard and getting bits of coverage on it and today it was announced in the guardian that they will be kept”.

http://www.guardian.co.uk/society/2011/may/19/andrew-lansley-u-turn-cancer-networks

When they work best

When cancer networks work best they should be invisible to patients. This is because behind the scenes they will be working with hospitals and health professionals to ensure that cancer patients receive

  • the highest possible quality of care
  • well coordinated
  • does not vary from region to region.

Plus they will be working out where services can be further developed to improve patients’ experience.  They are advocates for cancer patients to busy healthcare commissioners for whom cancer is just one of their priorities.

If anything should go wrong in service provision, such as posts being made redundant, a good cancer network will be there to liaise between users, clinicians and commissioners, to make sure high quality services are retained

Cancer networks are extremely important to cancer patients. Without them or a similar mechanism, cancer patients will be left in the lurch. They risk a serious decline in services, leading to a return of the extremes of postcode lottery and in the worst case a significant impact on survival rates.

Cancer patients are already finding that the ‘two week’ wait for tests has been ‘forgotten’;  without the networks these could go back to the bad old days.

Latest gossip from Whitehall says Cameron is by-passing La La Lansley, and consulting with Clegg.  So watch the political bloggs for updates.

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Politicians blame patients – rather than poor NHS treatment

Drugs

Image by Jenn Raynes via Flickr

They’re at it again –

saying we don’t take up screening for cancer

so it’s our fault we have poorer survival rates than most European Countries

 

We are constantly told it’s OUR fault that our post-cancer survival rates are worse than the French and other European nations – because we don’t take up invitations for screening.

Yet the World Health Organisation says we have one of the best rates in Europe for take-up of breast screening, etc.

It has to be something else.

Trying to get doctors to listen

And one reason could total lack of help to handle side effects of hormonal drugs.

Doctors hand out these packs of innocent-looking tablets, then sit back and ‘pretend’ they don’t know what to do when we present with side effects.  I was told of the benefits of Tamoxifen, and how statistical graphs showed that I could expect to live longer if I took them for five years.

When I turn up with horrendous side effects, doctors were in denial:  they’d never seen these symptoms;  my side effects weren’t caused by Tamoxifen;  did I want to come off the drugs?  etc. etc.

Survey

An NHS survey showed over 60% of us receive so little help from doctors to treat these side effectsd (temporary blindness, dreadful skin conditions, hot flushes, nausea – the list goes on) that we decide to ditch the drugs.  Even though Herceptin, Tamoxifen etc. are proven to extend a cancer patient’s survival.

Reports produced by Dr. Louise Atkins and Dr. Lesley Fallowfield in Sussex and Thomas I. Barron and others at Trinity College Dublin say the rate of non-persistence with therapy is higher than previously reported. ….. (raising) concerns about persistence with other oral hormonal therapies for breast cancer and oral antineoplastics in general. Oncologists need to identify those at risk of non-persistence and develop strategies to combat this barrier to treatment success.

The surveys on Early Discontinuation of Tamoxifen: A Lesson for Oncologists
Thomas I. Barron, MSc 1 *, Róisín Connolly, MB 2, Kathleen Bennett, PhD 1, John Fely, MD 1, M. John Kennedy, MB 2
1Department of Pharmacology and Therapeutics, Trinity College Dublin, Trinity Centre for Health Sciences, St. James’s Hospital, Dublin, Ireland
and
Intentional and non-intentional non-adherence to medication amongst breast cancer patients.  Dr. Louise Atkins and Dr. Lesley Fallowfield, Psychosocial Oncology Group at Sussex University.

Should be required reading for ALL oncologists.

Both reports have been out for over five years, and indicated from 50-65% of patients may come off these drugs.  Side effects can cause problems, but leaflets produced by cancer charities etc.  don’t suggest possible solutions, and Oncology nurses are often unable to suggest ways to mitigate side effects, particularly concerning painful skin conditions.  So with no help,  patients come off drugs – either openly or covertly.

As a breast cancer patient, I was delighted with my treatment, until, a week after starting Tamoxifen, I woke with bloody sheets and blistering, peeling skin.  Creams suggested by the hospital were totally useless, but eventually, going to my private doctor, he prescribed steroids, which cleared this up.  Then another bout happened a month later. Side effects had targeted my skin, from hair to nails, and showing this to my Oncology Nurse she peeled off another skin layer, saying she couldn’t recommend any commercial products to help (and drugs aren’t commercial?!).

I was sitting stripped naked in front of a crowd of giggling students, when the senior Dermatologist at Chelsea and Westminster Hospital told me, “it’s your age”, then swept out before I could ask “why?”

So I was forced to ‘fight’ for treatment if I didn’t want to be the one who crept into the corner and decided to hide from the world.  I went to France, where their hospitals are well versed in dealing with these problems, and possibly why  France has a far better post-cancer history.

The doctors sorted out my problems, said that the side effects I was showing were ‘classique’ when on Tamoxifen, and sent me how with sensible, clinically-trialled products that sorted out my peeling, bloody skin.

Now, nurses in Britain say “you do have lovely skin” – but it’s no thanks to their treatment.

Russ Hargreaves of Macmillan Cancer Centre at Chelsea and Westminster Hospital once gave an excellent talk on ‘The Good, the Bad and the Ugly of Breast Cancer Treatments’ and why we were getting problems; reassuring us we weren’t alone. His ten-minute presentation gave an intelligent and understandable insight into what was happening to our bodies, and why we were having problems with side effects.

But unless doctors in the UK pay attention to side effects, our survival rates may slip even further behind Europe.

European women get advice about side effects, and expect this as a matter of course.  We are left to find out what to do for ourselve.  No wonder so many of us take up herbal medicines and other non-proven products.  But it is the doctors’ fault if we do – where else is the average person to find help?

Surely we have the right to expect that if we are given drugs – the doctors are taught what are side effects, and how to handle them?

But of course – silly me! There is little money in solving drug side effects, only in making the drug in the first place.  And of course, the Oncologists have far too much to do – without taking time as they do in France, Germany, etc. to listen to the patient and carefully work through different clinically-trialled products that could help.

And when I discovered that the Australian product, Flexitol, was fantastic at handling the horrible rough, sore skin that covered my feet and made walking a misery, my local GP tried to cancel it from my prescription – saying it cost money!  He thought that wanting to prevent bloody blisters, etc. was ‘just cosmetic’.

But I hear that at last NICE are being asked to approve La Roche Posay products, developed in France to help our skins counter cancer drug side effects, etc.   Eighty countries around the world prescribe their products for those of us with skin problems from side effects, but we are so behind the rest of the world in dealing effectively with side effects, it makes one weep.

End

 

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Are you fed up with NHS bureaucracy?

LONDON, ENGLAND - APRIL 13:  Secretary of Stat...

Image by Getty Images via @daylife

Have your say and voice your views

Groundswell of public opinion against Andrew Lansleys Health Bill is swelling

The Patients’ Association need your views to show Dept. Health how many people are worried about way reforms are going.

I have just taken survey, and there are comment boxes in which one can list all the problems one has currently – and if they have got worse since Lansley started tinkering with NHS last July.

With more responses the Patients’ Association can put together a more representative view of what the NHS reforms mean to you. Their online survey should only take you 5 minutes to complete and they would really appreciate your help.

By answering the survey you will ensure that your views are fed into the heart of Government and heard by those making the decisions on the NHS.  The Patients’ Association are becoming a powerful lobby, and Lansley chose their association to give his first Ministerial speech, knowing how powerful they are.  They are probably comparable now to the massive lobbies in the States.

This is your chance to have YOUR say in the reforms!

The link to the survey https://www.surveymonkey.com/s/2LH5RXB
Do you want to voice your views?

In addition to their survey they are organising several independent listening events to discuss the reforms across the country and would like to invite you to take part.

Next week’s meetings will be in:

  • Taunton, Somerset
  • Gillingham, Dorset
  • Beverley, East Yorkshire
  • Shrewsbury, Shropshire
  • Truro, Cornwall
  • and Birmingham

If you would like to come to any of these meeting, please get in touch with Maryia on mariya@patients-association.com or Daniel on Daniel@patients-association.com

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400,000 sign petition to save NHS

THIS PETITION PROVES

PEOPLE POWER WORKS!

BUT NEEDS MORE SIGNATURES – GET YOUR FRIENDS TO SIGN!

 

“When we tell him his plans aren’t working, he doesn’t seem to want to hear what we’re saying.”                                                                                                                                                                                 Dr Hamish Meldrum, Chair of the British Medical Association, May 2011

 

But using modern IT, patients might just be able to get Andrew Lansley to listen to sense.

Today, the power of the Internet, and clever people ‘using’ it, it is a force to be reckoned with.

Latest petition, set up by 38 Degrees (who have proven they know how to ‘work’ petitions) now has an up-date for you to sign.

Sky News says “I can reveal that the Tory wobble is the result of a lobbying campaign by a pressure group called 38 Degrees, which has launched an internet petition which already has more than 252,000 signatures.”

As 38 Degrees say, “that’s us! Now we need to decide what we should do next to save the NHS. Please answer a few quick questions here:

http://www.38degrees.org.uk/up-the-pressure

Was Lansley’s Consultation really about ‘Listening’?

Andrew Lansley’s “listening exercise” has been carefully stage-managed. Most events have been closed to the public. In Sheffield last Friday, 38 Degrees members handing in their massive petition discovered that a “listening exercise” event had been held nearby hours earlier – but was kept secret until it was over.

That’s not the only reason it’s a sham. Behind the scenes, health officials have been told to carry on with Lansley’s original plans, and when one phones the Dept. Health it is obvious they are very, very unhappy bunnies.

The next two weeks are critical.

  • To get as many signatures as possible
  • To tell your MP your views
  • And if you have the funds, help 38 Degrees place adverts to stop Andrew Lansley using this listening exercise as cover for pushing through his plan.

Do we want private providers in NHS?

I am a very grateful user of private insurance, but also realise that private insurance companies have been held to ransome by NHS, and are now starting to invoke clauses and won’t pay for some procedures.  e.g. in Italian a DXA scan for osteoporosis is £40 in beautifully-appointed hospital.  In London my insurers are charged £120for a scan in a scruffy unit.

I am NOT against private companies being asked to supply services to the NHS provided that the service they provide is of good standard and good value for money (and better than much of that supplied today).   This is what happens in Europe, and as Lord Darzi said, French people pay the same on average for their healthcare as we do.

But we don’t want any more of the fiasco that is PFI, nor do I want more dubious private companies supplying services to my local Foundation hospital, that has left it with half of the main emergency exit blocked off for months, approx. one third of lifts out of order at any one time, telephone system that constantly puts callers through to wrong department, etc. and when our resident’s association writes for an explanation to CEO, never get a reply.

Amongst the questions are these, which I consider, in my little way, to cover what worries me about La La Lansley’s plans.

What survey states:

  • Don’t force the NHS to promote competition between private health companies: rule out price competition and promote co-operation and quality of care instead
  • Don’t allow private companies to “cherry pick” healthcare contracts in a way which could undermine local hospitals: put NHS services and hospitals first
  • Don’t take big decisions about health spending without experts and patients being involved as well as GPs
  • (the number of times I have seen private companies pull the wool over NHS’ eyes … simply because a Foundation Hospital Board hasn’t a clue about business)
  • Don’t allow big decisions about health spending be taken behind closed doors and without democratic scrutiny
  • Don’t force any big changes without testing them properly first – trial any changes in one area for several years first, then give parliament a fresh vote
  • Don’t remove the goverment’s “duty” to provide a comprehensive health service: keep that duty in law. €

We need to do two BIG things in next two months, whilst Cabinet is ‘consulting’ about the NHS:

1- Persuade our local MPs that the voters want a real rethink of NHS plans
2- Persuade Cameron and Clegg that it will ruin their reputation to push Lansley’s plans through

What are the best ways to do this?

  • Local events?
  • Newspaper ads?
  • Visit MPs?
  • Get more local health care experts involved? Something else?  Each has its merits, but what will make it happen is constantly DOING something.  Don’t let politicians ignore what patients want.

As 38 Degrees is proving, we can do this! By working together they planned the Save Our Forests campaign.

Now help them plan the campaign to protect the NHS, and sign:
http://www.38degrees.org.uk/up-the-pressure

Next time a politician says they are ‘passionate about the NHS’ – I bet they are.  But the treatment a politician will receive from the NHS, surrounded by their accolites, officials, etc. and rushed through because of ‘security’, with access to best care and top Consultants, is very different from the average patient’s treatment.

Want to help more?

38 Degrees is asking for “£30,000 will get us ads in the Times, the Mail and the Guardian next week. Please help sound the alarm by making a secure donation now: http://www.38degrees.org.uk/lansley-isnt-listening

Last week, the Royal College of GPs said they could “unravel” the NHS. And on Sunday, The Observer revealed that one of Lansley’s top advisers told private health companies to expect big profits when the NHS moves to a US-style “insurance system”.

We can’t let that happen. We all rely on the NHS sooner or later, to take care of us and our loved ones. It’s not perfect, but that’s no excuse for ignoring the advice of the real experts and pushing through these huge, untested changes. To stop these plans, 38 Degrees members are contacting and meeting MPs up and down the country.

 

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Zapping Joint Pain for cancer sufferers

Regenovex helped me walk more easily

 

Joint pain is one of the most prevalent but dreaded side effects of drugs – and can really drag you down.

As a survivor, you think treatment is over – then you start to feel pain in places you didn’t know existed.

When we fill out those medical questionnaires, apparently ‘Do you suffer from joint pain’ has more ticks than most other categories – so it affects many of us.  Doctors come up with all sorts of solutions;  often it is ‘buy this supplement over the counter’, and you just wonder if you are buying the right thing.

So when Mentholatum, who have produced helpful products for eyes (Rohto),  Mouth Ulcers (Algopain-eze) and Lymphoedemia (Deep Freeze), which I have written about elsewhere, come up with little capsules for joint pain – I gave them a try.

Warning! I am NOT a doctor, only a patient!  So I can’t tell you any medical reason for these capsules to work, but I can say they are helping me enormously.  The latest drug I am on has produced bad joint pain in places I didn’t know I had joints, and I have been hobbling around.Today, I suddenly realised I wasn’t having to favour any joints – they seemed to be working properly.  I tried out a few moves – went further, and have discovered that things are feeling much, much better!

So why the relief?
Probably the best place to get answers is to go on to www.thejointageinginformationservicepanel.com
and see what their panel of specialists has to say:

  • Dr. Jane Griffin, whose patients include many of the UK’s top rugby players, England Women’s Golf Assn. and the British Olympic Association.
  • Dr. Dominic Radford, another sports specialist,
  • Dr. Gill Jenkins who is apractising GP with an interest in rheumatology and bones,
  • and Sally Evans, a top Physio who works with the England Rugby players, as well as being an expert in musculoskeletal profiling.

I was lucky enough to meet up with this panel, whose sensible advice included the need to eat one – two portions of oily fish a week, but no more (problems with contaminants/pollutants).

However, they warn you MUST NOT take Regenovox if you are allergic to seafood.

They pointed out thatRegenovex contained Natural Marine Bionovex Oil, a pure marine oil derived from New Zealand Green Lipped Mussels – we are hearing a lot about benefits from these.

They told a group of us that Regenovex Capsules have been designed to help maintain daily joint health.
Their “unique, technically advanced formulation contains two functional ingredients from natural sources:
Marine Bionovex® oil + Hyaluronic Acid (HA).

  • An advanced formulation designed for joint health
  • Functional ingredients from natural sources
  • Small gelatin free softgel capsules
  • Free from artificial colours, preservatives, yeast, sugar
  • Convenient and easy to swallow

And I can’t promise you will be able to copy the figures below – but you never know!

 

 

 

Are American doctors more honest with cancer patients?

National Cancer Survivors Day

Image via Wikipedia

Are you a ‘Twilight Patient?’

 

Eight years after first treatment for cancer, U.S. Cancer patient Joanne Young has been told she is cancer-free. However, cancer treatment destroyed her ability to conceive, and she suffered bouts of brain fuzziness for a year or so after chemo. She had always had low blood pressure, but now she must take medication for high blood pressure.
“I’m happy for every day,” she says. “But at the same time, it’s not like everything just returns to what it was.”

Joanne belongs to a large and growing group—cancer survivors. There are 12 million in the U.S. alone, a number that has more than tripled in the last 30 years, according to Livestrong, the nonprofit group founded by renowned cyclist Lance Armstrong to support cancer survivors.

“Cancer treatments are more successful,” says Dr. Catherine Alfano, program director of the National Cancer Institute’s Office of Cancer Survivorship. “We also have an aging Baby Boomer population, and more people will be diagnosed and treated for cancer than ever before.” But, she points out, “Even while we have more diverse types and more successful treatments, they all still exact a toll on the body.” As a result, long-term survivors like Youner are the subjects of considerable medical attention and research.

Well done America – doctors are honest enough to admit survivors can have problems
And they are doing something about it.

Last year Livestrong surveyed more than 2,000 cancer survivors about their concerns. What was most interesting, notes Ruth Rechis, the foundation’s director of evaluation and research, was that “even up to 20 years out, no one had had all their issues resolved.”

In Britain, Survivors are told by doctors

  • You are free of cancer – it won’t come back
  • I don’t know why you are feeling tired – take a holiday
  • We don’t know what causes internal bleeding/fatigue/loss of nails/continual vomitting, etc.
    Instead of arranging tests, scans, blood tests etc. all for one day, these are strung out in a series of individual appointments
  • Patients are given the impression they are moaning for no cause – a nuisance – should ‘pull yourself together’ – why keep coming back?  I still don’t know if I should be furious, or laugh after I was told the other day, “you have had more than enough attention”.  Thanks, David Cameron – this is the result of current cuts in cancer care.
  • But Patients who go to Europe say doctors (both State and Private), will give a thorough medical, then suggest ideas and solutions.

So YOU are not alone, but while the problems survivors face vary according to their disease and treatment, here are some of the major health issues reported in the States:

Fatigue

Many people know that chemotherapy treatments can cause profound tiredness, but they may not realize that fatigue can persist in some survivors for years. “We’re not entirely sure, but it may be due to unchecked inflammation in the body,” says Dr. Patricia Ganz, a professor at UCLA School of Medicine. Treatment could possibly push the immune system into overdrive, and in certain patients, the resulting inflammation could increase fatigue “as if the body were constantly fighting off a bad flu,” Dr. Alfano adds.

Pain

Sportsman Kenechi Udeze was four seasons into playing for his team when searing migraines sent him to his physician in 2008. The headaches turned out to be a symptom of acute lymphoblastic leukemia. Udeze underwent a bone-marrow transplant the same year and was declared cancer-free. But the nerve damage, or neuropathy, from the aggressive treatment he underwent ended his pro-football career. “Nerves regenerate very slowly, and my feet, my grasp, they just weren’t what they were,” explains Udeze, now 27 and living in Seattle. The former defensive end has also been left with severe chronic pain. “In the middle of the night, my toes and ankles contract so hard, it’s like a cramp times 10,” he says. Neuropathic pain can be caused by some forms of chemotherapy. Radiation and surgery may also leave the patient with scar tissue, leading to painful tightening of the skin’s surface or internal adhesions. “Many cancer survivors need pain control,” Dr. Ganz says. “They need palliative care like you get at the end of life. Only here, they’re not dying and suffering—they’re living and suffering.”

Cognitive impairment

Last year in the Journal of Cancer Survivorship, 74 women were interviewed at least one year after the completion of their breast-cancer treatments. One of their most common complaints was what patients and doctors call “chemo brain,” a loss of memory and an inability to concentrate. No one is sure why it occurs, Dr. Alfano says. “Survivors are telling us they’re having cognitive problems, but when we give them standard neuropsychological tests, we can’t detect impairment. It may be the tests’ fault, so we’re using brain MRIs and PET scans to measure brain function.” According to Dr. Alfano, one current theory is that people who carry a certain gene associated with Alzheimer’s may be more vulnerable to chemo brain than people without the gene.

Infertility and sexual dysfunction

Cancer treatment can leave many patients—men and women—infertile. Even when it doesn’t, it can impair a woman’s fertility by reducing her total number of eggs. Some survivors also report suffering sexual dysfunction after they’ve been pronounced cancer-free, which could possibly result from a combination of physical, hormonal, and psychological factors.

Depression and anxiety

Survivors have an expression: “Cancer may leave your body, but it never leaves your mind.” Depression and anxiety could be natural reactions to receiving a traumatic diagnosis of a serious illness like cancer, but in some cases, they may be the result of treatment. “Clinicians are investigating if depression could be the result of the body’s hyperactive immune system,” Dr. Alfano says. “The impulse that helps you heal when you’re sick, of wanting to curl up in bed, may be part of an immune reaction.”

There’s also the fear of recurrence and “survivor’s guilt,” says Dr. Ganz, especially for those who have seen fellow patients die. “In my two years after treatment,” says Beth Silverman, 32, a breast-cancer survivor in Baltimore, “I buried 30 or 40 friends I made in support groups and through cancer networks.”

Other cancers

Of the 12 million U.S. survivors, 25 percent have ended up having multiple cancers—not just recurrences but, rather, entirely different cancers, according to Doug Ulman, president and CEO of Livestrong. While in college, Ulman was diagnosed with chondrosarcoma, a cartilage tumor; later, he faced two separate incidences of melanoma. Whether he had a susceptibility to cancer or whether the diseases were related to his treatments is unclear. “We don’t know what roles genetics and treatment play, but we know treatment has an impact,” he says.

As research on cancer survivors proceeds, solutions to their problems will likely be discovered or devised. For now, Dr. Alfano says, “physicians shouldn’t talk about patients going back to normal after treatment. We want to help people find the best ‘new normal.‘”

“Oncologists never use the word ‘cured’ anymore,” Silverman adds. “They say there is ‘no evidence of disease,’ or what we survivors call ‘NED.’

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