As councils across the country ratify budgets laden with cuts  to services and jobs. Swathes of pensioners, mums and dads students and youngsters started to interrupt the process, making sure that those in power ‘NOW’ knew, in no uncertain terms, the outrage of the general populous. It was a good sight to see.

But what are we doing in our own communities to help organisations that support People living with HIV? Are we doing enough? Are we just going too stand by as council’s steal cash earmarked for HIV/Aids support? Leaving many of the charities we have left, facing closure!

David Cameron vision of a BIG Society seems to centre on having an army volunteers busy in our communities ‘making a difference’! The idea that charitable organisations can provide this kind of ‘peer support’, in local areas without being properly financed to is both laughable and ludicrous.

The problem Mr Cameron has is that: his ‘deluded vision’ isn’t backed by the government’s policies. The Aids Support Grant that provided a vital funding stream for HIV charities, had its ring-fence removed last year and is now allocated via the your councils Formula Grant under HIV/AIDS Support.

If you want to find out how much your local authority is being allocated for HIV/Aids Support in 2011/12? Go to this link on NAT’s website (change the zoom percentage to 100%)

http://www.nat.org.uk/Media%20library/Files/Policy/2010/2011%20-%2012%20Settlement%20Grants%20rolling%20into%20formula%20grant-1.pdf

Eric Pickles, the Secretary of State for Communities and Local Government, has asked local authorities to continue to support the voluntary sector, but this may be falling on death ears. And when you see large organisations like Citizens Advice Bureau planning to close operations across the country, you begin to understand the scale of the problem.

When you give cash strapped councils greater powers it becomes the people’s role to scrutinise. There is plenty of money being allocated, but how much of it actually trickles down to the services that we need and use? Lots of that money gets allocated to other local government support services like Social Work Teams! But when was the last time you got support form a Social Worker? It’s virtually impossible service to tap into in London now.

The point I am trying to make is: all HIV organisations large and small are probably going to face funding cuts. But it will be the small charities most dependant on the money that are most under threat. These organisations may find themselves last in the queue when it comes to divvying up the cash.

More than ever, I believe we need to support HIV charities and organisations that deliver essential services like: counselling, peer support, respite care, group work and support for carers.

We can bring about change by challenging MP’s, local councillors and community leaders. The government has already made a few u-turns. They’ve been won by groups and charities that have tirelessly campaigned against government reforms.

In the Welfare Reform Bill that was announced two weeks ago there was plenty of bad news. But there were some u-turns.

• The Lib-Con coalition ditched plans to reduce housing benefit by 10% if they were still out of work after one year.

• There was a u-turn on scraping the mobility element of DLA for people living in care homes.

On HIV social care I recently heard this story.

• The Brigstowe Project in Bristol recently fought off funding cuts by Bristol City Council after they proposed to cut – in full- their Supporting People grant, a decision that would have closed the charity. But with a strong campaign led by the centres manager and its many HIV-positive service users, the decision was overturned.

So if your thinking how can I really make a difference? Think again, you can.

Why not check in with your local charity to find out if they are being targeted with cuts. If they are, ask how you can best help.

Check out NAT’s HIV Activists Network it is packed with resources that can help you campaign for change on HIV Social Care and lots of other issues that affect people living with HIV. http://www.nat.org.uk/Living-with-HIV/HIV-activists.aspx

I hope I have got you all thinking about Activism.

PS if you are experiencing HIV-related symptoms that vary and change over time you may want to check out this survey by NAT. http://www.surveymonkey.com/s/G89L86D

George Osborne

“Vive la Revolution Republic” This week the French managed to bring their country to a standstill because their government wants to raise the retirement age from 60 to 62!

It was a site to behold, our banner waving French neighbours marching (and rioting) from Paris to Leon. But I wonder how they view us here in the UK?  As we sit sipping tea, silent, our blood boiling, as the new Lib-Con Coalition present a government spending review that will save 81 billion, but hurt the poorest 10 per cent.

As George Osborne announced the final departmental spending cuts on Wednesday , it was the sinister smiles from the ministers who manage those departments that give away the underlying agenda of the coalition, revealing that ideological change is firmly at the heart of these cuts and that getting the country back on-track was the justifiable smoke screen.

But not everyone’s blood is boiling, many view these cuts essential and are supported by 60 per cent of the populace, passing many of then by. Infact, the goverment expect a surge in opinion polls in their favour. So when it comes to revolution, I will not hold my breath.

Areas of concern for people living with HIV and far reaching and will affect: the most vulnerable and sick, the homeless, single people and mothers with small children.

CONTRIBUTION BASED ESA REMOVED AFTER ONE YEAR

The welfare budget received extra attention yesterday with 7 billion in cuts announced, bringing in an estimated 18 billion of savings by 2014/15. With those in receipt of housing benefit, disability payments and tax credits taking the brunt.

One of the most controversial announcements yesterday was with regard to the employment and support allowance (ESA) the new benefit for people who can’t work due to illness or disability.

Since October 2008, ESA has been phased in to replace incapacity benefit for new claimants.  Existing claimants of incapacity benefit will be gradually moved over the ESA from February 2011.

There are two types of ESA. Contributory ESA is paid to people who satisfy the national insurance conditions. It is not means tested.  Income-related ESA is paid if you pass the means test. It is for people who are on low income and incapable of work. You don’t have to satisfy NI conditions.

Those in the: support group category that are severely disabled or terminally ill will not be affected by the one year rule. However, those in the: work related activity group who need the support before they return to work, will loose their benefit after a year, even  if they have not recovered and  are in reciept of contribution based ESA.

This has prompted a back lash from charities. Deborah Jack, CEO of the National Aids Trust (NAT) has criticising the Chancellor’s decision to put a one year time limit on the length of time a person can claim ESA, pointing out that it is likely to be detrimental to those living with a disability, including people living with HIV. See the fornt page for Jack’s reaction to the cuts.

I can also reveal that where the Work Capability Assessments has been used to assess new benefits claimants with illness and disability as many, as 68 per cent have failed the assessment. However, 50 per cent  have had a ESA granted after appeala, highlighting the poor standard of the assessments.

In another worrying development, those that are returned to job seekers allowance will loose 10 per cent of their housing benefit after one year, if they are still unemployed.

SHARED ROOM RATE TO BE EXTENDED 35 YEAR OLDS

The single room restriction on housing benefit that applies to the under 25 now, will be raised to 35 from April 2012. This will affect anyone living with HIV that is not in receipt of middle and high rates of DLA or living in social housing. Anyone that wants to live alone will have to share or make up the difference from their benefit.

In the emergency budget in June the Chancellor set a maximum local housing allowance. Meaning that there will be a cap on how much housing benefit you cam claim based on the size of your property and the area that you live in.

TAX CREDITS FROZEN

The tax credit freeze will have an impact on both families and single people that have returned to work and are on low incomes. Because there will be no inflationary rise in tax credits for this parliament, many will find that they are worse of a few years down the line.

DLA

We heard about the changes to changes to DLA in the emergency budget back in June when welfare cuts came in at 11 billion. However, I will recap anyway because I have learnt today from the Terrence Higgins Trust THT that the government have admitted that there are only 0.5 per cent of fraudulent DLA claims, but still seem committed to reaching their 20 per cent reduction in claimants, meaning that some people who should be entitled to the benefit will loose out because of targets.

SOCIAL HOUSING AT RISK FROM THE TORIES AGAIN!

The link between bad health and housing amongst people living with HIV is well documented. Many housing professionals have little understanding of the condition and remain unaware of the effect poor housing can have on the lives of those with HIV according to a joint study by NAT and Shelter in 2009.

Changes to social housing include:

• new tenants will be given a new type of council tenancy instead of the current secure tenancy.
• tenants’ circumstances will be assessed after a period of time to see if they still need subsidised housing.
• those whose financial circumstances have improved are likely to have to buy a home on the open market or rent from a private landlord (even if they can’t afford it).

The changes will not affect you if you are an existing tenant – it will only apply to people who are allocated a home after the legislation has been implemented.

The last 15 years have been complete disaster for social housing. It is true there have been more homes built, but what of the quality of those homes? Some housing associations have become debt heavy and were hit hard in the housing slump and many councils totally gave up and farmed out their housing stock to Arms Length Management Organisations (ALMO’s).

There has been no real vision or national plan for social housing, and it has been communities that have paid the price. However, housing associations have enough spare cash to borrow up to £2.7 billion, according to a new study by the Tenant Services Authority.

So why have the government waded in with sweeping reforms and massive cuts in the housing budget? Simple answer, they have no interest in the concept of social housing.  Margret Thatcher gloriously demonstrated the fact back in the 80s, when she created a housing boom with the sale of council houses, pocketing the cash to-boot. Councils never recovered.

Shelter’s chief executive Campbell Robb said: “It is a huge blow to see that housing, one of the most basic needs for every single person in this country, is facing some of the biggest cuts. A succession of governments has failed to address our housing crisis and today’s announcements suggest the coalition has firmly joined them in denying responsibility for  an entire generation’s ability to access decent, secure, affordable housing.”

The average rent for a three-bedroom council house is £85 a week (outside of London), but under the plans that could triple to £250 a week. The idea of asking tenants to pay for housing development is ludicrous, a concept in my opinion we should resist vigorously.

TOUGH TIMES AHEAD

So there you have it, a spending review that will have far reaching implications for many people living with HIV. For years now Cameron has created a mirage of a NEW Tory that listens and understands the needs of the most vulnerable in our society, a deception that unravelled yesterday, and one for the history books no doubt.

If Lady Thatcher was not in in hospital I am sure she would be patting David on the back and saying “Well done my boy, well done .” I doubt we will manage to replicate the French’s taste for disorderly or orderly behaviour, but I suspect that activists around the UK will be waiting for their moment to strike. “Vive la Revolution.”

To find out how the cuts will affect you go to www.tht.org.uk

To back shelters campaign for affordable housing go to www.shelter.org.uk

Last month I wrote a blog on GP involvement in HIV care and the NEW SCR records that will start to be created on the 5^Th July (this date will vary depending on where you live).

The HIV community seems split on whether the Secondary Care Record (SCR) is one step to far and won’t protect our confidentiality, or is on the other hand,  an excellent addition to our health care system.

So why should we be concerned? Most health professionals act and follow confidentiality guidelines by the letter and have to do so because of legal, ethical and professional obligations but while breaches are rare, they do happen!

Also the emergence of laws that criminalise HIV transmission means that someone with HIV could potentially be prosecuted for recklessly or intentionally transmitting HIV. This use of the law has left many people living with HIV feeling stigmatised and sensitive around the issue of disclosure.

Questions have also been raised as to the how accurate the records are and that doctors were unable to trust the SCR database as a single source of truth.

Because of these serious concerns I have tried to clarify the situation with regard to the inclusion of you HIV status and treatment within these SCR records.

The NHS booklet on SCR records that you should have received by now clearly states: “You can have a SCR but limit the information that health-care staff can access. You can discuss with your GP exactly what information is in and isn’t shared through your SCR.”

I had decided to have a SCR created but wanted my HIV status left out but I have now discovered that that is not possible! I will explain why.

In the first instance the records will contain information about: any allergies you have, your current prescriptions and whether you have had any bad reactions to medicines.

Because the SCR includes information on any medication you are taking, if you are taking combination therapy (and your GP knows your status) by default your HIV status is revealed: as for clinical reasons your GP cannot omit any drugs you are taking from the SCR.

However, if you are not on medication and you consider your status as sensitive information, speak to your GP. Your GP can limit information shared by using sealed and locked electronic envelopes. These envelopes were built into the SCR records to protect patient confidentiality.

It’s also worth mentioning, that once the SCR is created you are always asked for permission to access the record (unless you are unconscious). So if for any reason you didn’t want to allow a health worker to view your SCR, just say NO.

The SCR information line reiterated to me that If you are NOT on medication and wanted your HIV status to be treated as sensitive information and not visible your SCR, then your GP should respect your wishes and have your HIV status put in one of the sealed and locked electronic envelopes, not visible on the SCR.

If your HIV status is put in a sealed envelope this will show up, but the doctor treating you will have to ask your permission to open it.

I was also told by the SCR information line that you could have a SCR created and limit access to only the GP surgery (which seemed a bit pointless) or your can simply opt out.

If you are unsure about what to do: you can opt out now and opt back in later, or you can opt out later providing that the SCR has not been accessed.

In the rush to get the scheme running nationally you might find as I did, that your GP practice is saying ‘its either opt in or opt out’ this is not the case and you should challenge this and refer them back to their PCT for guidance.

The SCR is seen by some as a step towards an electronic patient database, that would not protect the patient confidentiality that HIV-positive people have come to expect. I was told by my HIV clinic that they have no plans to use these records.

According to the Researchers at University College, London: there has been a low take up in using the SCR records in secondary care settings. However, they have been accessed more often in after-hours services like accident and emergency.

It is in this instance that the SCR may become a life saving tool, especially if you have experienced a bad reaction to a particular medicine.

I have done my best to present this information as accurately as possible and any feedback would be appreciated.

Further reading:

If you want to opt out go to www.nhscarerecords.nhs.uk and download the – opt out form – and take it into your GP surgery. Call up a week later and ask for written conformation.

An interesting blog I found on SCRs definitely worth a read:  www.computerweekly.com

Go to the NAT website and download ‘Confidentiality in Healthcare for People Living with HIV’ www.nat.org.uk

Click here to find out Ten ways to make the most of your GP by NAM

The role a GP should play in the care of people living with HIV has been a running debate for years.

As a community we remain divided on the issue. Positive people living outside London are more likely to take up GP services, whereas those in London are less trusting of the GP environment.

The debate has raised many questions.

Are GP’s equipped to deal with patients with a complex medical condition like HIV?

Will a GP practice disclose my HIV status to a third party?

Will the new NHS Summary Care Record disclose my HIV status?

Because of the stigma and discrimination associated with living with HIV, many of us have become protective of the anonymity that a specialist HIV clinic offers.

However, we need to face facts. Despite the lib-con coalition promising to protect NHS budgets, HIV clinics are expensive and managers are asking clinics to make cuts of up to 10 per cent.

Our HIV consultant is no longer a one-stop-pharmacy for anything from anti-depressants to anti-inflammatory, and we will most likely be seeing a lot less of them.

But we should never loose sight of the fact that the drugs we take can be dangerous and can never be managed by our GP. A statement, I am sure they would agree with.

On the whole, my own experience of a GP practice has been good; I like the convenience and proximity of my surgery and it saves me travelling five miles across town.

Like most things in life though, nothing is perfect. I build up a good relationship with a Doctor, only to find a year or so down the line they have moved on.  And many new GP’s are not always up to speed on drugs that can react badly when taken HIV meds. This can be very frustrating.

But, I have to weigh up the ‘pros and cons.’ I had been suffering for many years with chronic depression, tiredness and endless sleepless nights and more recently dizzy spells, symptoms often associated with combination therapy.

When I reached breaking point, my GP sent me for some routine blood tests (ones not included in my regular HIV bloods) and it turned out I had an under-active thyroid. The TSH levels were off the scale, over 50. Basically, my thyroid had stopped working and had probably been that way for years.

So I have to wonder: what position would I be in now if I did not have a GP?  HIV consultants are specialist and do not always pick up on things that GP’s see on a daily basis.

There are some aspects around confidentiality that I am less happy about at my GP practice, even for someone like me that will disclose.

When I am in the surgery making an appointment, I always wonder if a big HIV+ sign is visible to the receptionist? You see for me, this is one step too far, as I want to decide who I disclose to, a point I will raise with my Doctor next time I go in.

However, I feel much more confident that my Doctor would not disclose my status to a third party without my written consent. Not that I am thinking of taking out a mortgage or getting life insurance anytime soon. So If that’s an issue for you, then ask your GP to clarify their working policy on the issue of disclosure.

For about half of us that are using GP’s the pressing issue is: the changes the NHS are making to the way they store our records. (These changes do not do not affect Scotland or Wales.)

The NHS are introducing an electronic database: summary care records (SCRs) that will contain information about allergies and any medication you are taking and will be available to NHS staff. For instance, if you were taken into an A&E department the doctor treating you would be able to access your SCR.

The programme was rolled out at the start of the year and many of you will have had letters. You have 12 weeks to opt-out of the scheme or go into your GP and discuss the information that you are happy to go on the SCR. After that if a record has been created and providing it has not been accessed you can still opt- out.

I have a nasty reaction to penicillin so the chances are I will allow a SCR to be created, but I will ask for the HIV stuff to be left out. Again, I want to be in control of any disclosure of my HIV status.

The bottom line is: a lot is changing in the way in which we receive our HIV care, but I really do champion anyone that is kicking up a stink.

Until there is a fundamental shift in the public perception of people-living-with-HIV and stigma and discrimination is stamped out, the chances are tens-of-thousands will still cling to the anonymity of their HIV clinics.

If you want to find out more about SCRs or how to opt-out go to www.nhscarerecords.nhs.uk

Ten ways to make the most of your GP by NAM

John Williams

Where have I put that polling card? I have it, it’s in a safe place, but like most people my attempts to put things in safe places usually end with me losing them… D’oh!

Well election week is finally here, after a rather interesting campaign – mainly fought in a series of what appeared to be – presidential TV debates!

I dread elections now. A life long Labour supporter (Iraq was the last straw) they just further remind me of how few choice I have left. However, the prospect of a hung parliament does spice things up, and I won’t be the only person wondering if Clegg and his Liberals are a real alternative?

But as a HIV-positive person that relies on NHS services, should my vote reflect the – manifesto promises – of the three main parties and how will they handle a health service where demand is on the increase?

Of course Brown has pledged to protect the NHS, but Labour have already asked the NHS to make efficiency savings of £20 billion over the next three years. However, they say they will increased funding in real terms, paying for it with the 1 per cent rise in national insurance.

Clegg will protect frontline services but is determined to cut NHS bureaucracy with big cuts at department of health. Liberals will use targets less, cap pay and bonuses for managers and get rid of unnecessary quangoes.

Cameron has drawn up a 20-point-pledge. The Tories will cut administration costs in the NHS by a third. Introduce new hotline for urgent care to run alongside 999 and fines for missed dentist appointments. Oh and a Single budget for each person suffering from chronic illnesses to cover their health and social care, that may effect you and me.

The one thing they are all saying is that the NHS costs too much. HIV clinics are expensive with large drugs bills. In London where I live, the hospitals look after half the population of people-living-with-HIV in the UK.  These services will, and are, being asked to cut budgets by as much as 10 per cent already.

These cuts could effect how often we get to see our Doctors. There may be fewer Consultancy posts created in HIV clinics to cope with a growing patient base. We may not get the treatment choices we do now if drug costs are not brought under control and drug budgets come under scrutiny.

I have come to the realisation that when it comes to the NHS, I doubt it really matters which party wins on Thursday. The NHS is a prime target for cuts and it’s already pulling its belt in.

So I am back to the drawing board when it comes to my vote, and wondering again what have I done with that elusive polling card?

Happy voting

Welcome to Positive Pulse, a not for profit venture, set up to give HIV-positive people and those affected by the virus, a louder voice in our community.

Here the online blogs will tell our stories and turn the spotlight on what it is like to live with HIV.

Here you can discuss and debate the issues that really matter to our community and access relevant news and information on local services for people with HIV.

Why do we need a site like this?

A few years ago, I co-ordinated a readers’ panel for the late great Positive Nation magazine. In that role I was privileged to come into contact with a diverse and powerful group of hivers. These people were never scared of speaking their minds with passion and despite their many cultural differences, they still found common ground on living with HIV.

A repeated plea from that readers’ panel was ‘why doesn’t the HIV community have a dedicated site, a hub of information and services that reflect our diversity?’ For as long as I can remember, various UK HIV organisations have promised to deliver that online information ‘hub’, but we were constantly told ‘It’s in development,’

In many ways I would like to recreate the spirit and the momentum of that readers’ panel right here online. The panel gave people a clear unmediated voice – a voice not strangled by the bureaucratic speak of HIV agencies obsessed with ‘outcomes’ and ‘targets’ – the same agencies who presume to know how to support people with HIV.

As funds for HIV come under increasing pressure, maybe it is time we became more vocal about how that money should be spent.

A recent review of the Aids Support Grant by the National Aids Trust found: that many local authorities that receive the grant use it well and address the social care needs of HIV-positive people locally; however, up-to half of the local authorities that took part in the study, do not carry out any needs assessment before allocating the grant.

The grant, which is ring fenced (and should stay ring fenced) is clearly not being used to its full potential in some parts of the country. But with the added lack of transparency in how the grant is used locally and with some organisations raising questions about top-slicing, this is a story we need to keep a close eye on.

Am I surprised by the NAT finding? Frankly – no. I remember volunteering for a London HIV charity that received a substantial six figure grant that in reality only supported a small number of people. A good example of how the (ASG) can easily get allocated disproportionately

A grant worth £21.8 million a year (2009/10) deserves better regulation. HIV-positive people are the ones who suffer, if the Department and Health and local government waste money or redirect it away from people living with the virus.

If you want to have your say or have a great idea for a feature or want to tell your story, get in touch email:  editorial@positivepulse.co.uk  This is your site but it will only work if we all step up and tell our stories –  that is  the only way we can break the stigma and discrimination we experience in our day-to-day lives.

John Williams