Dementia

 Next week is Dementia awareness week.

 I hate dementia. It's a horrible illness that strips us of our dignity and makes families lose their loved ones. It causes a huge burden in caring and as yet has little in the way of help or cure.

Dementia is an area that divides the medical profession. From Professor June Andrews statement that GPs should be sued for failing to diagnose dementia to the more pragmatic Dr Gavin Francis who was amongst a group of doctors who described the 'cash for diagnosis' policy on dementia and reaching new levels of absurdity. (this was a brief contract that offered GPs a sum of money for each new diagnosis of dementia they made)

 All doctors are agreed that dementia is a very significant and emotive diagnosis. The division arises from the thought that diagnosing the illness early is of benefit.

 There are a few drugs now available in the UK that are licensed to slow the progression of Alzheimers type dementia. The problem is they don't really have a clinically significant effect and have a high risk of side effects. One evidence review of multiple studies suggested that dementia medications showed a 2.8 point less deterioration in the ADAS-Cog dementia score after six months compared to placebo. Bearing in mind this is on a scale of 0-70 that's not going to make a huge difference in quality of life. It's also worth noting that there is very little published evidence out there comparing beyond 6 months.

 There are some reasons that make it worth seeing your doctor early if you have concerns about your memory. First of all there are a host of investigations to rule out other causes, B12 deficiency, underactive thyroid and depression can all mimic dementia. And some dementia is caused by vascular disease in which case it is worth treating blood pressure and cholesterol.

 Being diagnosed early can help with planning too. Facing the thought that you may one day not be fit to make decisions about your life is a hard subject to broach, but naming a medical and financial power of attorney is a much more straightforward process while you still have that ability.

 When considering something like this, I ask myself what I would want if I was the patient, or their relative. I don't know that I would want to face the diagnosis at an early stage, and I definitely would not take dementia medication as I currently feel the impact of side effects greatly outweighs the benefits in disease progression. However if they ever come up with something more effective, I would reconsider.

 What I would do is take up the offer of investigations, just in case there was a treatable cause. I would want to plan with my family the best option for future care, any financial considerations and sadly inform the DVLA (this is compulsory if you have been diagnosed with dementia).

 I would follow any lifestyle advice that may help slow progression and I would support any causes that help support carers for people with dementia and research into the illness.

 http://www.alzheimers.org.uk/
http://www.alzheimersresearchuk.org/

 What I am planning to do, and hope other people take up the cause. Is make a special date for considering dementia on the 25th May. (okay it's after next week, but bear with me)
 I am a huge, huge fan of Terry Pratchett. His books taught me more about the joys and frailties of human life than any degree or course. Anyone who has read 'Night Watch' will recall the revolutions of the 'Glorious 25th May'.
 So come the 25th May, change your profile picture to a sprig of Lilac. 'Wear the lilac' for dementia in memory of Sir Terry, and donate to his JustGiving site which is raising money for RICE

 https://www.justgiving.com/Terry-Pratchett

10 Things I didn't study at medical school (but people expect me to know)

(Image from cequejenpense.com)

 As a GP I love to help people. Sometimes that is treating their medical condition, sometimes it's giving lifestyle advice to prevent illness and sometimes it is just providing a sympathetic ear.
 What often amazes me is the amazing diversity of things we get asked about. We cover a huge amount of medicine and are expected to know about pretty much every speciality, but there are some things I just have to approach with a bit of common sense or a baffled shrug of my shoulders.
 I often think the position of GP has replaced that of the local priest, wiseperson or family elders and we are often approached for some bizarre problems that aren't really appropriate. Here are a few of the more frequent offences.


1. Financial.

 I cannot tell you if you should sell your second house or who you should allocate as your power of attorney. I graduated with a shedload of debt and bought my tiny house in 2004 on a 100% mortgage. I'm really not clued up about financial advice, except to say don't do what I did. Please get a qualified, independent financial advisor, not me.

2. Employment issues.

 The number of patients I saw with employment issues grew hugely in the last few years. Both in private and public sector jobs. Now occasionally, when someone is really struggling with stress and is unable to work it is appropriate to be signed off work. However most of the time this can worsen the problem and the people to approach are your union or ACAS. I don't know much about employment law and I certainly can't intervene on your behalf to stop your boss being a bully, or to make them re-instate the annual leave that you booked but has now been cancelled, or to stop them putting you on night shifts.

3. Marriage guidance.

 Well I've been married for 12 years, but I don't think that qualifies me in any way to advise you on whether you should stay with your husband or leave him for your lover. Or indeed if you should stay with your horrible partner because you don't want to move out of your house. And I'm not going to get involved in any custody bickering either, please just put the needs of your children first and act like adults in all this.


4. Education.

 If your child is struggling at school you need to talk to the teacher, and keep talking to them. I cannot magically get your child assigned to the most popular school in the area, and I will not support you in keeping your child at home because they are unhappy at school. If you want to home school them then you need to go through the appropriate channels.

5. Dentistry.

 I've had a dental infection and the pain was horrendous, so I sympathise, I really do. But that doesn't mean it's right for me to give you antibiotics. Dental problems need to see a dentist. 111 can let you know the contact details for the emergency service if you are not registered with one. I can just about name the teeth and that's pretty much the full extent of any dental training I had. There have been cases of patients getting severe illnesses due to partly treated their dental infections with GP antibiotics and not getting the abscess treated properly, so however much you don't like dentists, or their fees, I'm not going to collude with you on this one.

6. First aid.

 Now I will offer first aid to anyone in the vicinity who needs it. However, to my amazement we weren't taught any first aid at medical school except CPR. Luckily a few years with the Red Cross in my youth covered most of that. And being a mother to 4 boys has been a crash course in the rest. But it really is something I think should be covered in medical school.

7. Alternative Medicine.

 Now I'm going to risk offending here because I think most 'alternative' medicine is a crock of smelly stuff. At best I think there are some well meaning individuals out there who love to use an extended placebo effect to make people feel a bit better, at worst  think there are a bunch of callous charlatans who mislead and take advantage of vulnerable people in the name of profit.
 So please don't ask me if I approve of your homeopathic remedy, or if I will sign a waiver form to say it's safe for you to have Hopi ear candles or cupping. If you practitioner is at all qualified and knowledgeable they will be able to tell you themselves if it is appropriate and above all take responsibility for it rather than passing the buck to me.
 I cannot tell you if herbal remedies are safe to take because they are not tested. Herbal remedies are classified as supplements, not medicines so do not have to go through the rigorous trials of effectiveness and safety that drugs go through. Until they have to do this, I'm not endorsing any of them.


8. Weight loss.

 Now I'd like to think I have some knowledge of how to lose weight, having managed it myself to a certain extent. Medical school actually covers very little in the way of healthy eating. We get a brief module on cholesterol and various important vitamins and minerals, then we're turfed out into the real world and expected to dole out advice.
 There are a few sources of good information out there, but I've heard some really terrible advice given out by GPs, and like normal humans we can get carried away with the latest trends. It is a very hard area to carry out evidence based medicine and good studies are few and hard to carry out.
 Weight loss is a very individual path,  My advice would be to know where you are going wrong; log your food and drink intake and be honest; you will need to invest time and effort to see success, and anything that offers miracle results without significant work is going to be a scam.

9. Hair and beauty stuff.

 When most girls were experimenting with hair and make up I was studying, or working in a factory saving money for college. As a result I don't have a clue about make up, in fact if anyone could teach me how to do that upper eyelid eyeliner thing I'd be forever grateful. So if you come to me and ask if I think you should have various beauty treatments, or how to make your hair shinier, I'm going to be less help than your hairdresser.

10. Fortune-telling.

 Just room for one final pet peeve. I am often approached by patients who want to know if their cold will progress into tonsillitis, or a chest infection. As they're going on holiday, or have exams, or it's Christmas. I would love to be able to tell the future, I'd be off to buy a winning lottery ticket and handing in my resignation. But sadly this is not the case and I will just have to work hard to earn a living like the majority of the population.

 So before you come to see us, have a think about if it's something covered in a medical curriculum. Because if not you're just getting the same advice you could get from your next door neighbour.

6 Reasons your GP won't prescribe antibiotics.

It's a common complaint to hear. 'I went to my GP with this terrible cough and he said it was a virus.' with an aggrieved look to suggest that the person has been terribly deprived. As a GP, one of the things that used to really bug me was the hurt, shocked look we would get if we disappointed someone's expectations that they would be walking away with a treatment for their winter cold.
 I used to wonder why people were so unhappy. Surely they realised that we recommend the safest, best option? Why did they always look as though they thought we had a secret, hidden cure for a common cold and were depriving them of it?
 So here's a tongue-in-cheek response to those complaining with 6 reasons we don't prescribe antibiotics.

1. The doctor wants you to suffer.

 Clearly you must have annoyed the doctor in a previous appointment. Maybe someone has been complaining about you to the doctor and they're seeing a chance of a little revenge, or perhaps you offended the receptionist in some way and they secretly messaged the doctor to tell them you deserve to suffer. Actually, if we really disliked you a combination of erythromycin (an antibiotic highly likely to cause nausea and vomiting) and metronidazole (this is the one you really can't drink alcohol with-trust me you'd regret it) would be much more vicious than making you let the illness cure itself.

2. They're just trying to save money.

 The news is full of the effects of the governments 22 billion 'efficiency savings' (don't let me go there, you may witness a hulk-esque transformation into a ranting, foaming anti-politician fanatic) so it stands to reason that the government are sending secret missives to GPs, probably bribing them with more time on the golf course, to reduce antibiotic prescribing.
 Nope sorry. Amoxicillin costs the NHS about a pound. If you're paying prescription fees of £8.20 that's not a bad profit for the government, maybe they should be encouraging us?
 We do get monitored on our antibiotic prescribing rates, although there is no financial incentive. High rates of prescribing can indicate a problem GP, which leads me onto the next item.

3. They just want to get rid of me.

 'I went to the doctor and they just weren't interested, they just wanted me out of the door.' Now I'll be entirely honest here and let you into a major secret. GPs are human beings too. Sometimes, just sometimes we have days where we cannot wait to get home. Most of us have families and we might have been up all night with a vomiting toddler, we might have teenagers or spouses who have started the day with an argument and we want to home and make it right, or we might have spent all morning with a dying patient and just want to go home to a cup of tea and a hug from our nearest and dearest. We all try to avoid seeming rushed or disinterested, but we might just have a bad day where this shines through. I'm sorry this can happen, and always try to look back through notes if I feel I've had an off day and make sure nobody could have been poorly treated. This is why I cannot emphasize enough that you can come back and see us again, or see a different GP.
 But enough of this tangent. Explaining why antibiotics aren't a good idea, explaining what symptoms to look out for, and when to come back if things aren't better, takes time and patience. I can print off and sign an antibiotic prescription in 30 seconds and be merrily waving you out of the door much faster, which is why high rates of prescribing can be a sign of a lazy or struggling doctor.

4. They're in collusion with 'Big Pharma' to rip us off.

 I have heard this theory so included it here, but the only thing I can write about it is 'How?' How exactly would NOT giving antibiotics benefit the pharmaceutical company?
 The recent government decided that GPs were a corrupt lot and easily influenced by drug companies. We are no longer even allowed to be given a free pen or Post-It note in case it makes us prescribe costly, unneeded medication. I have no objection to this and am a big fan of the No Free Lunch organisation but would just like to see the politicians apply such scrupulous measures to themselves.

5. They just don't care.

 Once upon a time people applied to medical school because it was a well paid career or they wanted power and influence. Those people now go into finance or politics. There is no power and little money in being a GP.
 The commonest reason people go into medicine is because they are bright individuals with good skills in science-based subjects who want to use their abilities to help people.
 We don't prescribe antibiotics because we want to help. Take a winter cough, only 1 in 40 people with a winter cough go on to develop a chest infection needing antibiotics. Could we treat all 40 to prevent 1? Well it would be cheap, but antibiotics have a 1 in 8 chance of causing side effects. The maths is simple and doesn't even begin to consider the risks of antibiotic resistance. So although it might seem like we're being cruel and letting you suffer, we're really trying to prevent more suffering than is needed.

6. I want to make sure I'm not ill over Christmas/my holiday/my wedding but my doctor doesn't think it's important.

 Okay this doesn't quite fit in but I included it as it is a common thing that people come to the GP with. The scenario is that they're feeling a bit ropey and have something important coming up and want antibiotics to prevent an illness.
 Now I do sympathise with this. No-one wants their special day ruined so I can see why you come but...
 Sadly we don't study Divination at medical school. Which is a shame. Being a GP would be so much easier if we could see the future. So I simply refer you to the statistics above. Ask anyone who's had antibiotic induced diarrhoea, C. Diff, Stevens Johnson syndrome or horrendous thrush from antibiotics and you would understand why we don't want to risk giving you this.

 So next time you see your GP and they're not handing out the goodies, remember we really do have your best interests at heart.

Summer's Nearly Here

 Sometimes it's hard to think of inspiration for a new blog post. Scouring the medical news items and awareness day updates for ideas helps, at times. Then last night the unexpected and unwanted arrival of a 12cm long centipede in our bedroom gave me the kickstart I needed to down multiple cups of tea and get writing.

 Over here we are preparing for the rainy season. Boats are being pulled out of the sea, extra layers of weather-proof paint added to the hotels, and sadly CCTV being installed at our house due to increased risk of burglaries. So it's strange to see the optimistic threads from friends and family on social media with the recent sunshine and start of good weather.

 How can I rain on their parade? My evil, jealous side thought...well, not really. But last night's venomous visitor made me think on the subject of insect bites and all the unpleasant summer experiences that can happen, and that often present to us GPs.

 So let's start with insect bites. You are unlikely to be facing the intense pain of a centipede bite (which is meant to be horrendous and treated with pain relief, anti-histamines and steroids, or by rubbing on raw red onion according to local advice -I know which I'd prefer) but may well suffer from troublesome bites from gnats, midges and mosquitoes.

 As a general rule any redness and swelling from these occurring in the first 48-72 hours is response to the histamine in the bite and best treated with antihistamine cream or tablets. If there is no improvement after this or if the redness is spreading then it's worth seeing a GP to consider if the bite has caused a skin infection.

 We frequently get asked how to prevent bites and reactions, and to be honest, there's not much apart from cover up and use repellent (and I'm not entirely convinced repellent does much). I am a fan of taking a regular hayfever tablet daily if you're on holiday and prone to reacting to bites.

 What does need to see a doctor is a tick bite. These tiny creatures can carry Lyme disease, so if you get bitten by one and develop the classic target rash or any flu-like symptoms in the next 30 days you need to see a doctor.   (photo from pediatricdoc.com)

 Another common complaint we see is sun burn and sun stroke. First of all these don't need to see a GP. Really. Sorry if I sound grumpy but these should be pretty easy to manage at home, save the appointments for those who really need them guys. 

 With both of these prevention is so much easier than treatment. Invest in good quality, high factor suncream. You'll not just be glad of it when you are pain free rather than a red, blistering, burning Brit, but it'll keep your skin youthful and dewy and prevent skin cancer. (and please don't try to convince us you need a prescription to save a few pounds, sunscreen on prescription is only for a tiny proportion of people, and your dermatologist will tell you if you are one of them. Haven't needed to see a dermatologist? Then you don't need prescription-strength sunscreen)

 Cover up in the hottest times of day, wear a hat an drink plenty of water (not just beer) it really is simple. 

 If you do get caught out then there is no magical cure. Simple paracetamol or ibuprofen will counter the pain of sunburn and the fluey symptoms of sunstroke then just hydrate, hydrate, hydrate and give it time.

Summer is also the time of barbecues. To much wine and not enough heat on the sausages can make for some poorly guests. Most of the time gastroenteritis is an unpleasant but brief illness that clears itself in seven days. If you've had it for under a week then just drink plenty of fluids and only see your doctor if you are passing blood or have a lot of pain. Also avoid treatments like Imodium unless absolutely necessary as they can prolong your recovery.

 Have you got a holiday booked? Flying somewhere exotic? Fantastic, have a lovely, lovely time, but please remember it takes a month for vaccines to build up to their full strength so book your travel clinic appointment with plenty of time to spare (most vaccines will cover you for at least a year, so you can't really book it too early) and please don't try to plead for an emergency appointment the friday before you fly.

 You can get more information on what is needed at http://www.fitfortravel.nhs.uk/home.

Why good intentions aren't always enough

 Back when I worked as a GP partner I was in a tiny village surgery. I liked the surgery and the patients, it was genuinely a privilege to look after the lovely people registered with the practice.
 Working in a little practice has a lot of advantages. You get to really know your patients and their families, it's easy to get to know and get on with all the staff and you feel like you are making a difference.
 The downside to being little is that you can feel indispensable. As a GP you are always 'duty doctor' dealing with all the emergencies and queries, but you are also trying to deal with the routine stuff, admin, meetings and management at the same time.
 In a practice with only a couple of doctors, it is hard to take time off for annual leave or sickness when you know your colleague will have to work on their day off to cover you.
 Small practices also earn less money. So I found myself working 9 sessions a week (a session is a half day, and a full time GP is considered to be 8 sessions in most areas) to earn less than I did as a trainee. However the practice was close to home, and being somewhere I liked outweighed the financial shortcomings.
 My husband spent a good proportion of each year overseas. I raced each morning to get our children up and out of the door, straight to the surgery and dealing with queries, then at the end of each day raced home to get them fed, washed and to sleep. A balancing act familiar to any working parent.
 Sometimes the children would be ill, and luckily would be packed off to my parents nearby for the day. Sometimes if it was minor they would spend a morning in our staff room with a handheld games console.
 Sometimes I would catch their illnesses, and shuffle into work full of Beechams or anti-sickness medication, knowing that my partner was away and a locum would be near impossible to find at short notice. Not the best option but I felt I was truly doing the best for my patients.
 Then one winter I was behind reception when the wife of one of our patients came in, desperate for a home visit. I didn't know them very well but knew they were prone to being a bit dramatic. I was desperately trying to get ahead with work to get out to a hospital appointment at lunch time, having been cancelled due to snow the previous week.
 Her pleas were that her husband was desperately ill and dying and the doctor needed to come out at lunchtime.
 I sat behind the screens and told reception to tell her if he was that bad he had to go to A&E straight away. I still don't know to this day how much of that decision was actually clinical and how much was avoiding the visit because I was anxious about my own appointment.
 My appointment confirmed that I had to be admitted for treatment. I asked if it could be postponed for a few days so I could be admitted over a long weekend.
 A couple of days later I saw the computer-generated report from A&E diagnosing him with anxiety and shrugged it off.
 The next day they phoned for a visit again. My partner was in as well as me that day (most days we worked alone) and I asked her to do it. Maybe not wanting to face them, maybe just worried about my upcoming treatment.
  My partner admitted him to the medical ward where he was diagnosed with terminal lung cancer.

A couple of weeks later I met with the couple. They wanted to let me know how disappointed they were that I didn't visit on that first day. I hung my head and apologised for not seeing them.
 You could argue that the choice to go to A&E was appropriate, and you could argue that it didn't affect his prognosis.
 But, my biggest learning point from this is how we as GPs have a responsibility to make sure we are performing at our best.
 We might think we are heroes for working when we are ill. We might think patients would credit us for working through heartbreak and emotional distress.
 But really our patients deserve to be looked after by someone who is at their highest competency.
 So take annual leave, take the sick leave you need and not what you think will cause the least disruption. by looking after yourself, you will be caring more for your patients than you think.

The importance of time

I read David Cameron's pre-election promises regarding the NHS with relief. Relief that I am no longer a GP, relief that I will not have to keep on working in an ever-demoralising work environment, relief that I will not be an NHS patient in the near future.
 But I also worry. Once I had great pride in our NHS services. Through goodwill of frontline workers and healthy clinician-management relationships we used to provide a fantastic service. I worked in a hospital that had social workers and occupational therapists in the Emergency Department, where patients wouldn't be sent home unless they were proven fit to be independent, and were never sent home in the middle of the night. Then I saw the advent of 4 hour targets, the hospital was financially penalised for breaches, and suddenly clipboard bearing idiots with no other focus than meeting these targets were deciding who was admitted and who was sent home.
 Political involvement in the NHS is destroying it. Many think this is the underlying aim, with the ultimate plan to sell off NHS contracts to private providers. I suspect there is some truth in this.
 The NHS was set up to provide us with what we need, and instead the politicians make empty promises based on winning votes from the well, rare users of the NHS who think convenience and speed are more important than complete care.
 The two things that really, really annoy me are the demands for appointments of convenience, and the desire to be seen the minute any symptoms starts.
 Now wanting an appointment at a convenient time I do understand. Pill checks, BP reviews, routine stuff, you don't want to have to book a full day off and ring repeatedly from 7am only to be told there are no appointments. But most practices have moved away from this, most have appointments open up to a month in advance. If you are organised you can easily book an early morning or late evening appointment. Most of the disappointment comes not from lack of appropriate appointments, but from people only remembering a day before and then wanting the earliest or latest slot when it was booked by someone who was organised. Should the NHS really have to fund millions of pounds worth of extra doctors hours because you only remember your 6 months worth of pills are running out on the last day?

 Jeremy Hunt famously let on that he took his own children to A&E because he couldn't wait for the out of hours service.
 First of all let me remind you that when the GP contract was renegotiated in 2004 there was an amazing set up where local GPs co-operated to share out of hours cover. The government believed they could provide this service cheaper by opening it to private providers. Existing GP co-ops that bid to run services were not selected and the resulting sparce cover is the result.
  But my key point, and the aim of the title, is that time is a crucial part of making a diagnosis.
 Recently a visiting friend had an infected insect bite. A sensible friend they shared my reluctance to take antibiotics unless strictly necessary and decided to keep it clean and dry and watch for any signs of deterioration. 30 minutes later they had a fever and flu-like symptoms.
 Had they been Jeremy Hunt-like, and wanted seeing immediately, it would have been too soon. Symptoms develop with time. And while some things do need seeing immediately (meningitis and septicaemia, chest pain, acute shortness of breath to name a few), most things benefit from having a chance to develop.
 So please don't think that being seen for a sore throat in half an hour is a good thing. It only means you'll be sent away to come back again in a few days if it's no better. Time is a diagnostic aid, and sometimes all the treatment you need.

Down Syndrome Awareness Day; What the cute pictures aren't telling you

As the daughter of a special needs teacher I grew up with a huge amount of exposure to children with Down's. A lot of my school holidays were spent helping in the classroom  (we lived in a separate educational district so my half term dates often differed to my mums) and I met some wonderful, fun, affectionate children who I still remember fondly.

 This year on 21st March (21/3 - get it?) the internet will be flooded with pictures of cute babies and toddlers with Down's Syndrome. Everyone will click 'like' and 'share' to show how accepting they are of these cute children, but we need to show the rest; the tears, the challenges, the scars from heart surgery, the overweight adults, the struggle to get any kind of help once they pass the age of 18.
As a student I remember being very briefly involved in the care of a couple who had gone through extensive IVF treatments to conceive twin babies, only to discover one had Down Syndrome. I was horrendously judgemental about the fact that they chose to terminate the baby with Down's, at a ten percent risk of harming the other baby.
 'How can they be so desperate to conceive that they go through round after round of IVF, then kill one child and risk the other because the baby isn't perfect,' my twenty year old self ranted to other trainees once I was well out of any possible earshot. Now I'm a bit older and wiser I feel incredibly guilty about being so judgemental, the thoughts and decisions they went through must have been heartbreaking and terrible.
 I am very very lucky to have 4 wonderful (well, some of the time) children. For my first two pregnancies I declined antenatal testing for genetic diseases. 'I know about Down's,' I thought, 'A child with Down's will be as much of a blessing and just as loved.'
 A few years later I gratefully accepted the offer of quadruple screening for pregnancies 3 and 4. I'm still not sure what I would have done if the results showed high risk, I don't think anyone can know until they are in that situation, but a few experiences have opened my eyes to see beyond the cuteness.
 I'm still haunted by the worried faces of a family I once looked after. Now in their late seventies they had a surprise pregnancy, a blessing when the menopause seemed more likely, that resulted in their daughter, Tracey (names changed for confidentiality). At first despite the shock, and the mourning stage that most parents go through when their child is diagnosed, life seemed lovely. They were well supported by the health visiting team and as Tracey grew she got a place at a nearby special needs school where she was doted on by staff and students.
 But Tracey kept on growing, until she was too old for school, and suddenly the support dropped away. The local college let her join a special class for a couple of hours a week, but she often didn't feel like going and there was no way her increasingly frail parents could force a 10 stone plus twenty year old, with the emotional control of a much younger child, to go against her will.
 She sees a psychiatrist for adult learning disabilities, who does next to nothing, and funding for any supportive team members faded away years ago in the ever increasing NHS cuts.
 Social services had very little to offer, unless she needed residential care there was nothing around.
 Her parents were facing their own illnesses, surgery and chronic symptoms that made caring very hard. Perhaps they wondered about Tracey's older sister, a single mum who had worked and worked to buy a tiny house for her and her child. There would be no room there for Tracey, and the meagre sixty pounds or so carer's allowance would hardly fund a family of three if she gave up work to care for her sister. Having scraped and saved to own her own home meant she would be ineligible for most benefits.
 Could I have done this to my family? It is increasingly likely that my children will not have the luxury of having a stay at home partner as inflation pushes the cost of living ever higher. Social and supportive care is deteriorating as council run initiatives get farmed out to private providers who only care about profit. I remain thankful that I have never had to  make that decision.
 So here's what I would like to see this awareness day. Don't just show the cuteness, show the reality. Talk about the good times and the bad. Yes, we need to increase awareness of all learning disabilities, and the support for people with LD after the age of 18 is abysmal. Send funding to help increase independent living, to provide much needed breaks for struggling families. Apply pressure to make benefits more accessible. And don't forget the other learning disabilities that aren't so photogenic.

http://www.downs-syndrome.org.uk/