LINks Information

19 January, 2011 | By Steve Ford

The precise make-up of the new health and wellbeing boards has been set out in the Health and Social Care Bill.

The bill confirms that local authorities will have a duty to establish the boards, which are intended to lead on improving the strategic coordination of commissioning across NHS, social care, and related children’s and public health services.

It states that each board must include the following:

• at least one local authority councillor,the director of adult social services for the local authority,
• the director of children’s services for the local authority,
• the director of public health for the local authority,
• a representative of the local healthwatch organisation for the area of the local authority,
• a representative of each relevant commissioning consortium,
• and such other persons, or representatives of such other persons, as the local authority thinks appropriate.

A representative of the NHS Commissioning Board must also sit on the board when local authorities are drawing up joint strategic needs assessments and related strategies.

The bill states: “The National Health Service Commissioning Board must appoint a representative to join the health and wellbeing board for the purpose of participating in its preparation of the assessment or (as the case may be) the strategy.”

The wellbeing board may also request a representative from the commissioning board if it is “considering a matter that relates to the exercise or proposed exercise of the commissioning functions” of the commissioning board “in relation to the authority’s area”.

It states: “If the health and wellbeing board so requests, the National Health Service Commissioning Board must appoint a representative to join the health and wellbeing board for the purpose of participating in its consideration of the matter.”

However, the bill says that the representative “may, with the agreement of the health and wellbeing board, be a person who is not a member or employee of the National Health Service Commissioning Board”.

Additionally the bill says the elected mayor or the executive leader of the local authority may sit on the board as the sole council representative or as well as another councillor.

The bill also sets out the main functions of the wellbeing boards, which are to:

• encourage persons who arrange for the provision of any health or social care services in that area to work in an integrated manner,
• provide such advice, assistance or other support as it thinks appropriate for the purpose of encouraging the making of arrangements in connection with the provision of such services,
• encourage persons who arrange for the provision of health-related services in its area to work closely with the health and wellbeing board,
• encourage persons who arrange for the provision of any health or social care services in its area and persons who arrange for the provision of any health-related services in its area to work closely together.

Commissioning consortia are also required to consult with wellbeing boards when drawing up their annual plan “setting out how it proposes to exercise its functions in that year”.

Additionally the bill says health and wellbeing boards may group together to discharge their functions.

It states:  “Two or more health and wellbeing boards may make arrangements for any of their functions to be exercisable jointly; any of their functions to be exercisable by a joint sub-committee of the boards; a joint sub-committee of the boards to advise them on any matter related to the exercise of their functions.”

The Government have today published their Health and Social care Bill which many are describing as the ‘biggest shake up the NHS has seen since its inception’, you can read the full Bill by clicking on http://www.publications.parliament.uk/pa/cm201011/cmbills/132/11132.pdf

A round up of responses….

Rethink

Changes to the NHS can only work in the best interests of patients if their voices are heard, warns Rethink.

Plans to reform the NHS will be a risky gamble if they are not supported by rigorous local scrutiny, the national mental health charity Rethink has warned.

Speaking in advance of the publication of the NHS Health and Social Care Bill tomorrow, Chief Executive Paul Jenkins said:

“It is vital patients have a strong and powerful voice under the new system and that local communities have a say in what services are needed.

“Without that safeguard ministers will be taking a big gamble over the future of the NHS.”

It’s essential that new bodies like HealthWatch are given the power and resources to hold the NHS to account and ensure it meets the needs of everyone, not just those who shout the loudest.

“Debate will be passionate over the coming months, but no voice is more important than that of the patient. Rethink will be campaigning to make sure that this new NHS is accountable to everyone it serves, particularly the most marginalised groups.”

Rethink also wants to see more support for GPs in the plans.

“GPs will be responsible for commissioning mental health services, but tell us that they need more training to understand those specialist services.

“Cases of severe mental illness, while more common than often thought, are not on the day to day appointment list in GPs surgeries.

“They tell us they want more training and support to help some of the most vulnerable people in our society. Over 40% of GPs we spoke to say they’re worried about their own lack of knowledge about the services available.”

RCGP
The RCGP said it ‘makes sense’ for health professionals to be involved in the planning of services, but the proposals risk ‘destabilising the NHS and causing long-term harm to patient outcomes’.

RCGP chairwoman Dr Clare Gerada said ‘we must guard against fragmentation and unnecessary duplication within a health service that is run by a wide array of competing public, private and voluntary sector providers, that delivers less choice and fewer services, reduces integration between primary and secondary care and increases bureaucratic costs’.

Patient choices as outlined in the Bill ‘run a risk of destabilising the NHS and causing long-term harm to patient outcomes’. The RCGP has also yet to receive sufficient evidence to be reassured the plans would prevent this from happening.

She concluded: ‘The NHS has for more than 60 years delivered a fair and efficient system of healthcare for millions of patients. We acknowledge that improvements can always be made, but we must work with the Government to protect the founding principles of the NHS; the stakes are too high to lose it now.’

BMA
The BMA said ploughing ahead with the reforms at the speed proposed was a ‘massive gamble’.

Dr Hamish Meldrum, chairman of council at the BMA, said: ‘The BMA supports greater involvement of clinicians in planning and shaping NHS services, but the benefits that clinician-led commissioning can bring are threatened by other parts of the Bill.’

He added: ‘Forcing commissioners of care to tender contracts to any willing provider, including NHS providers, voluntary sector organisations and commercial companies, could destabilise local health economies and fragment care for patients.

‘Adding price competition into the mix could also allow large commercial companies to enter the NHS market and chase the most profitable contracts, using their size to undercut on price, which could ultimately damage local services.’

Royal College of Physicians
The Royal College of Physicians (RCP) supports the shift towards putting clinicians and patients in the driving seat but is concerned the Bill doesn’t require specialists to be at the heart of commissioning.

Sir Richard Thompson, president of the Royal College of Physicians, said: ‘The scale and pace of change – and the challenge of unprecedented efficiency savings – should not be underestimated. Neither should the risks if we get this wrong.’

Unison
Unison, the public sector union, called the Health Bill a ‘disaster’ of Titanic proportions’. Karen Jennings, head of health at Unison, said: ‘This Titanic health bill threatens to sink our NHS. The only survivors will be the private health companies that are circling like sharks, waiting to move in and make a killing.

‘Lansley has turned his back on the warnings from across the medical establishment that these changes are unnecessary, undemocratic and unlikely to deliver improvements in patient care. We need a U-turn from the Government.’ 

Unite
Unite said the Bill is ‘a charter for private profit at the expense of patients care’.

Unite’s national officer for health, David Fleming, said: ‘It is clear that one of the biggest influences on Tory ideology regarding health policy has been the massive and insidious lobbying by the  private healthcare companies, which have opened their cheque books for David Cameron big-time.’

He added: ‘The GP consortia, the supposed vanguard of this so-called reform programme, will be juggling financial decisions with the help of the private healthcare companies they will buy-in, versus the needs of their patients – this is a stark conflict of interest. Patients should always come first.’

The Nuffield Trust
The Nuffield Trust said the planned reforms are ‘broadly in the right direction’ but they will have to be judged on the extent to which they deliver – with minimum disruption – sustained improvements to patient care during a period of major financial challenge for the NHS.

Dr Jennifer Dixon, director of the Nuffield Trust, said: ‘The NHS is at a fork in the road. It embarks on this period of reform with much strength but the pressures it faces over the next four years will continue to rise.

‘Given the reforms over the past 20 years the Government’s decision to devolve more responsibility to the front line is logical. However, this approach carries significant risks in today’s financial climate and needs to be managed very carefully.’

General Healthcare Group
General Healthcare Group, the UK’s largest private hospital group, welcomed the proposed reforms and said it was ‘only right’ the NHS, private and third sector providers worked together in austere times.

Adrian Fawcett, chief executive of General Healthcare Group, said: ‘In our view, the challenge for instituting these reforms will be about maintaining the pace of change and how instability during the period of transition is minimised.’

The Royal College of Obstetricians and Gynaecologists
Allowing GP consortia to commission maternity services will impede creation of a high-quality service, warns the Royal College of Obstetricians and Gynaecologists (RCOG).

RCOG president Dr Tony Falconer said: ‘Our concern, at all times, must be that the women in our care have access to the best available services and RCOG will be monitoring standards as well as supporting their development.’

The King’s Fund
The Bill signals the biggest shake-up of the NHS since its inception, the King’s Fund has said.

Chris Ham, chief executive of The King’s Fund, said: ‘The last decade has seen significant progress in the performance of the NHS. While ministers are right to stress the need for reform to make it truly world class, these gains are at risk from the combination of the funding squeeze and the speed and scale of the reforms as currently planned.’

Mr Ham added: ‘But, while the government’s reforms have the potential to improve the NHS, they will be implemented against the backdrop of the biggest financial challenge in its history.

‘Finding the £20bn in efficiency savings needed to maintain services must be the overriding priority, so the very real risk that the speed and scale of the reforms could destabilise the NHS and undermine care must be actively managed.’

NHS Confederation
The NHS Confederation urged MPs to ‘forensically analyse’ the Health Bill.

NHS Confederation acting chief executive Nigel Edwards said: ‘We support the objectives behind this legislation but there are huge risks and major uncertainties associated with it.

‘The system is already geared up for change and we can not afford for these reforms to fail – the public will not forgive us. The focus in parliament has to be on making this work on behalf of patients.’

CBI
John Cridland, CBI director-general designate, said: ‘We support the Government’s plans to modernise the NHS, because this will lead to better services for patients, and ensure taxpayers’ money is spent wisely.

‘Allowing the best provider to deliver healthcare services, whether they are a private company or a charity, will spur innovation and choice. But bidders must be able to compete for contracts on a level playing field.’

Pharmacy Voice
Pharmacist union Pharmacy Voice believes the focus on GP-led commissioning risks overlooks the contribution of other healthcare professionals.

Pharmacy Voice chief executive Rob Darracott, said: ‘The NHS is about more than doctors, and GP commissioning has to be about more than GPs. The Health Secretary acknowledges that pharmacists have an important and expanding role in supporting better health, but we now need to see his words backed by action. Pharmacists see more people, more often, even than GPs do.’

THE PCT MANAGEMENT TEAM ON 11 JANUARY 2011

These headlines are for rapid briefing purposes about the lay/user issues arising in the meeting. It is not a full report from the meeting.

PEC and PCT Board papers are available on the NHS Wandsworth website: www.wandsworth.nhs.uk   contact Sandra Allingham on 020 8812 7740 or e-mail sandra.allingham@wpct.nhs.uk

The contents of this briefing note are for information only and are solely the responsibility of Andrew Craig, PEC Lay Member, including errors and omissions. They do not necessarily represent the views of the PEC or NHS Wandsworth.

Matters Arising

COPD and Pulmonary Rehabilitation Needs Assessment

Both of these related areas are being targeted for service redesign. The report stated that “patient and public Involvement is key to these projects and a patient group will be established to work with the clinicians to develop the proposals.” The PEC recommended that an “invest to save” model be used, reflecting the importance of COPD to the QIPP programme.

I asked that user engagement begin before the formulation of proposals – reflecting the government’s commitment to “nothing about us without us” – so that it would be clear that the redesign of the pathway reflected service users’ contributions. The national literature on patient views on these services should be used to test out local views.  Having one patient on the working group was tokenism and inadequate and must be reconsidered.

Items for Discussion

Teenage Pregnancy Performance Update

This subject is really about young people’s sexual health and wellbeing, not just teenage pregnancy.  Funding streams were coming to an end and there was a need to integrate activity with the local authority to get the right reach into the target group.  There was good evidence of service user input to this work.  Reliable data showed Wandsworth pregnancy rates falling, but the overall rate remained above the London and national averages. The rate of conceptions in young women under 18 was still the 10^th highest in London and 43^rd highest in England. 

Wards with the highest numbers of under 18 conception rates are: Queenstown; Nightingale; Latchmere with rates nearly three times that in low rate wards.  Numbers of conceptions are highest in Latchmere, Queenstown, Roehampton and Furzedown.  Black and minority ethnic groups had much higher probability of pregnancy than the white population and this had to be addressed in terms of vulnerability and aspirations from an equality point of view.  The emergency contraception pathway and access to it was not clear enough to young people.  A text service had been used for this, but it had been discontinued.   

I supported the integration with the local authority approach for strategy and funding and hoped that the action plan would be considered by the new Health and Well Being Board led by the Council at an early point.   This subject should be part of the Joint Strategic Needs Assessment.  Any communications method that increased awareness and access to emergency contraception had to be used with this target group.  We needed to understand why comparison boroughs like Westminster and Hammersmith and Fulham had achieved greater success than we had in Wandsworth.

Breastfeeding Update

Evidence was that breast feeding initiation rates were high immediately post birth, but in the 6-8 week period after that things broke down, especially for some groups of white mothers. The target for 2010/11 is that 75.7% of infants are recorded as being partially or totally breastfed by the GP practice at the 6-8 week check. Mothers from black and ethnic minority groups were much more likely to continue breast feeding. Locally, we were only just meeting this target and the evidence suggested performance was slipping as mothers were reporting not being advised by health visitors about breast feeding.   PEC agreed that this had to be a mainstream service and must not be left to a specialist.  The outcomes in the contract had to be tightened, including financial penalties for not meeting breastfeeding targets, rather than funding found for a specialist post.  

I expressed strong concern if the so-called “universal service” provided by midwives and health visitors locally seemed – on the basis of this report at least – to be failing where adherence to breast feeding was concerned. This is such a crucial issue that it cannot be left to a specialist to pick up the pieces.  The Health and Well Being Board should consider this as a public health priority and the message to Community Services Wandsworth needed to be strong that performance had to improve.

Items for Approval

TB Needs Assessment and Action Plan

Tuberculosis is a significant public health problem in Wandsworth, with the highest TB mortality rate in SW London and the biggest incidence (new cases per year) 29/100,000. Most cases occur in non-UK born ethnic minorities from sub-Saharan Africa (particularly Somalia) and the Indian sub-continent (India, Pakistan and Bangladesh).  This is reflected in the considerable geographical variation in incidence that is seen within the borough, with the highest rates occurring in Tooting, Earlsfield, Graveney, Roehampton, Furzedown and Latchmere.   

Drug resistance is an emerging problem within Wandsworth with 13% of culture-confirmed cases resistant to at least one anti-tuberculosis drug and 3.5% resistant to more than one drug in 2008. The problem is compounded by considerable stigma around TB in minority ethnic populations, which results in late presentation and poor treatment rates.  Against this, local providers are meeting local and national metrics for finding and treating cases. Universal BCG vaccination about to start.  Wandsworth Prison is included in the action plan as TB is a significant problem in that facility.

PEC agreed the action plan and recommended it to the Board

Reports for Information

Cancer Diagnosis Audit

This is another area where late presentation and delays in treatment make the problem much worse than it should be in terms of survival rates.  An audit across the sector showed: 46% of patients diagnosed with cancer had been referred via the two week wait rule (ie 56% FAILED to be referred within the required time; 47% of the audit patients were referred to secondary care after one visit to the GP surgery, ie for 53% it took MORE than one visit and in some cases many more.

The median average total pathway was shortest in breast cancer cases (27 days) followed by lung cancer cases which took an average of 27 days in total.  Colorectal cancer cases took 54 days on average whilst prostate cancer cases took longest of all at 64 days.  The biggest reason for the variance was patient delay, see below.

GPs participating in the audit identified that there had been 146 (22%) avoidable delays out of 704 cases.  Of these:

45 cases (31%) were due to the patient delaying presentation, investigation or hospital referral, 

34 cases (23%) were delayed due to the GP not initially thinking about diagnosis,

27 cases (18%) were delayed after referral to secondary care,

16 cases (11%) could have been referred earlier using the two week rule

14 cases  (9%)  were delayed due to communication problems between primary and secondary care and

10 cases (7%) were delayed due to other causes.

PEC agreed the action plan of the Cancer Network and recommended it to the Board.  The February PEC will receive a report based on interviews with the public analysing views about signs and symptoms of common cancers.

Open Space

I raised two issues

Comparative GP practice performance data.

Despite promising to produce it since July last year, the PCT has not delivered comparative GP practice performance data accessible to the public to facilitate choice and changes of GP practice. Work to make this suitable for the website was done by the comms department but never materialised.  Government has confirmed it is proceeding in the forthcoming HSC Bill with abolition of practice boundaries, so user friendly comparative information to enable choices and changes is essential.  It is not acceptable to the public to say that NHS London is doing this work – there is no sign of it on their website –  so the PCTs do not have to.   

PEC agreed that a “balanced score card” showing comparative performance of all Wandsworth GP practices by name will be completed in the next 4 weeks and put up on the PCT website.

Hospital discharge.  

Wandsworth LINk published its hospital discharge study in mid December based on patient and carer interviews.  This is important user-focused intelligence, so how will the existing and future commissioners take account of it?

Next Meeting of the NHS Wandsworth Board: Wednesday 26^th  January 2011 in the Richmond/Barnes Room at Queen Mary’s Hospital, London SW15.

Next Meeting of the PEC: 09h30 on Tuesday, 8^th February 2011.  I have given my apologies and there will be no Lay Member’s report from this meeting.

Wandsworth LINk’s Enter and View Team have just published their interim report on their visit to Springfield hospital. The team visited Springfield Hospital with a view to talking to some patients with Mental Health problems who were near to discharge. The team were hoping to test whether the discharge was safe, how involved in the process patients and their carers had felt, whether they were uneasy or confident about the plan, and whether they would like any other form of help which had not been planned.

Following consulation with providers regarding this initial report, the team will carry out an additional visit and produce a full report shortly.

To read the Enter and View interim report click here

By Gareth Iacobucci

Exclusive: The second wave of GP pathfinder consortia unveiled today include many who had been previously rejected for failing to engage sufficiently with the programme of NHS efficiency savings, Pulse can reveal.

The Department of Health has announced that a further 89 pathfinders will test the ability of GPs to take over commissioning from PCTs, taking the total up to 141.

It comes as the GP spearheading the pathfinder scheme for the DH told Pulse that the latest wave included many of those who were unsuccessful in the first wave – who were now demonstrating ‘significant involvement’ with the Government’s QIPP agenda.

The pathfinders announced today include GP practices providing care to 28.6 million people across England, which, when added to the first wave, means over 50% of the population are now covered by pathfinder consortia.

The DH said the early progress of the pathfinders had reached ‘beyond our expectations’, with Prime Minister David Cameron expected to welcome the ‘groundswell of support from general practices’ in a speech later today.

Health secretary Andrew Lansley said the latest wave of pathfinders provided evidence that GPs were behind his plans.

He said: ‘This second group of selected pathfinders is welcome evidence of widespread enthusiasm for taking these ideas forward.’

‘It is clear that GPs and nurses are ready and willing to take on commissioning responsibilities, the pathfinders to date demonstrate this but most importantly, the changes will enable them to make the decisions that better meet the needs of their local communities and improve outcomes for their patients.’

8871 6271 or wmoreton@wandsworth.gov.uk

In the final part of her investigation into the cuts, Amelia Gentleman reports on a proposal which charities say could trap some disabled people inside their care homes

• Amelia Gentleman
• guardian.co.uk, Wednesday 12 January 2011 18.39 GMT
• Article history

Over the last two months Louisa Spivack has written to the prime minister, to the chancellor, to Iain Duncan Smith, secretary of state for work and pensions, to Maria Miller, minister for disabled people, and to equalities minister Lynne Featherstone, warning them that a planned cut to the benefits received by her severely disabled sons will drastically reduce their quality of life, confining them permanently to their care home.

So far, she has received an impersonal, printed postcard from the prime minister’s office, informing her that her concerns have been passed on to the relevant authorities, and an automated email telling her that ministers are too busy to deal with her comments in person. She is both furious and distraught.

“They are targeting a section of society who are unable to defend themselves in any way at all. That seems to me immoral and cowardly,” she says.

A brief line on page 69 of the comprehensive spending review in October announced that the mobility component of the disability living allowance (DLA) would be removed from people living in residential care. The benefit reduction was not explained in George Osborne’s speech to parliament, where he outlined the scope of the cuts, and subsequently has not attracted much attention amid the myriad of changes announced that day.

To anyone who has no professional or personal connection with caring for people with disabilities, it is an arcane benefit, apparently easy to snip, its title giving no hint of the devastating consequences that could accompany the cut.

Trapped

But disability charities are so aghast at the decision that they have questioned whether ministers fully understood the significance of the change they were making. They are lobbying hard to educate MPs, explaining that, for the disabled people who receive it, the allowance represents the difference between being institutionalised, trapped inside their care home for the rest of their lives, or being able to travel to see friends and family, and to participate in society beyond the care home gates.

The DLA mobility component helps to meet some of the extra costs disabled people face when they travel. The government proposes to remove it for those who are living in residential care, affecting the independence of 60,000 to 80,000 people with disabilities.

“Before the election we were assured by David Cameron and George Osborne that the most vulnerable people in society would not be affected by the benefit cuts,” Spivack says, adding that she had believed Cameron’s own experience of parenting a severely disabled child would make him sensitive to the needs of others in a similar position.

“There was an idea, years ago, that people like my sons should not be seen or heard. This will take us back to a time when people like them were confined to homes,” she says.

Her two sons, Daniel, 34, and Joel, 25, are both severely autistic, and live in a care home in Sussex catering specifically for people on the autistic spectrum. They are living far from their parents’ home in north London (where they were cared for until they left school) because there were no good specialist homes with places for them any closer. Neither of them speak, but Danny is more severely disabled than his younger brother, diagnosed with epilepsy, curvature of the spine, and a prolapsed disc that leads to periods when he cannot move. Both sons receive the higher rate of the mobility allowance, £49.85 a week, a reflection of the seriousness of their disabilities.

Danny’s behaviour disturbs other residents at the home, so he is unable to travel with them. The DLA mobility component has helped fund a car exclusively for his use, which his carers use to take him for daily walks in the nearby forests, regular swimming sessions and all his doctors’ appointments.

Without his own car it would simply be impractical for him to leave the home, his mother says. If his routine is disrupted Danny can get anxious and a bit aggressive, she explains. He is unable to use public transport, and even if he could, the care home in Sussex is in a rural area, not close to a bus stop. When he has travelled by bus in the past, Spivack says, other passengers have been upset by him, and he is equally distressed by the noise of other people.

“The public is more accepting of young children with disabilities than they are of adults with disabilities. Since he got big and noisy, the public don’t like it,” she says. “It can be quite a painful experience to be in a noisy environment. The sound of a baby crying really upsets Danny. He can’t be taken out with other people. He doesn’t like the close proximity to others.”

The car he uses at the moment has been fitted with a seat right at the back, with seatbelts designed both to support his back and to restrain him. “He has to sit at the back of the vehicle because he has a tendency to take his T-shirt off and flick it at the driver,” Spivack says. “If he didn’t have his car, he wouldn’t be able to go walking or swimming, his health would deteriorate. He would be depressed. He would be stuck on site.”

The government says the allowance will be removed in October 2012 because it duplicates money already allocated by local authorities to care homes to fund transport. Charities and opposition MPs say this does not take into account the funding shortages already being experienced by care homes and local authorities, and warn that there will not be enough money in local authority budgets to provide the required transport.

The money allocated to Spivack’s younger son has gone towards financing the care home’s shared vehicle, as he is better able to travel with other residents. “The government says local authorities should fund communal vehicles. But local authorities are so cash-strapped – how are they going to be able to finance it? Consequently there are going to be lots of people like Danny and Joel who are going to be housebound,” Spivack says. “If [the benefit] is going to be withdrawn it will take away their only enjoyment in life.”

Describing the decision as “callous”, Richard Hawkes, the chief executive of the disability charity Scope, questioned its fairness. “Disabled people and their families do not have ‘broad shoulders’, so why are they bearing the brunt of these cuts?” he asked.

In a statement, the Department for Work and Pensions said: “Currently some people in residential care receive support for their mobility needs through disability living allowance and mobility support funded by their local authority. We want to remove that duplication and make sure that the system is fair. These changes won’t come into effect until October 2012 and we will continue to work with disabled people and organisations to ensure benefits meet the needs of disabled people. The government expects that the cut will save £135m a year by 2014-15.”

But Tom Madders, head of campaigns at the National Autistic Society, says: “For a relatively small saving to the Treasury the removal of this benefit will greatly reduce the quality of life and autonomy of a significant group of people who are already marginalised in society.”

For the moment, this is a cut that the disability charities are very worried about, but one that has not yet become a source of more widespread outrage. But campaigners warn that this issue, coupled with the broader cuts to disability benefits, is likely to trigger visible and noisy protests this year.

The decision to reassess claimants’ eligibility for DLA more generally is likely to mean that more than half a million disabled people will lose some or all of the benefit, says Neil Coyle, director of policy with the Disability Alliance. “Coalition cuts to welfare are not well targeted and will affect even people with severe health conditions and disabled people with multiple impairments, leaving the disproportionately worst off now to suffer further as the cuts take effect.”

Campaigners are concerned that, as well as disrupting daily routines, the removal of the benefit will prevent care home residents from spending time at home with their families.

Tahira Khan-Sindhu’s son Hamzah was born at 27 weeks. Now 22, he has cerebral palsy, epilepsy, learning disabilities, no speech and is doubly incontinent. She and her husband cared for him at home until he was 18, when, reluctantly, they moved him into a care home about an hour’s bus ride away from their home on the outskirts of Manchester.

Forgotten

Since the move she has been anxious that he should not feel he has been consigned there permanently, forgotten by his relatives. She has used the mobility allowance to help finance a van that can accommodate a wheelchair, so she can take him home for regular visits.

“I don’t want him to think that he’s there and that’s it. He is very excited when he comes home. He meets the extended family, he meets up with my parents, he has cousins, nephews, nieces, and they all shower so much love over him,” she says. Without the allowance, the care home would not be able to spare the communal vehicle to ferry him home. He would not be able to travel by public transport and the cost of a taxi would be prohibitive.

“The place where he lives does not have enough vehicles. Six people live there, all reliant on one vehicle. The care home doesn’t have the funds. They are being cut,” she says.

Kate Green, Khan-Sindhu’s Labour MP for Stretford and Urmston, says it is unrealistic to expect these costs to be met by stretched local authorities. “People in residential care are more likely to have highly specialised, costly transport needs,” she says.

“If this benefit is withdrawn it will become impossible for many of them to get out when they want to, visit family and friends, or even make trips to the shops. They’ll be prisoners in their own homes.”

The charity Mencap was so surprised by the decision to remove the benefit that it suggests that the government has failed to appreciate how important it is. “We believe that the government has made a mistake and has misunderstood how people use this important benefit. Without this vital lifeline, people in care will lose their independence, be unable to take part in activities that they enjoy and be cut off from their friends and family,” the charity says.

“We are very concerned that, as an unintended consequence of this proposal, many people with a learning disability will be denied opportunities to meet with friends and families, participate in external social activities and engage with their local communities.”

A group of charities published a report yesterday, Don’t Limit Mobility, setting out their concerns about the cut, arguing that local authorities are in no position to meet the shortfall, and warning that the impact on those who receive the allowance will be “massive”, “with many left unable to afford to leave their home, and denied the independence most people take for granted”.

At her home in Old Trafford, Khan-Sindhu gives vent to a rush of fury. “I know that the government faces hard decisions, but what about the children? Where is their quality of life? My son can’t say ‘I want to go and see my mum and dad – I’ll take the train or I’ll walk.’

“He is being penalised for being disabled. Where are his human rights? Where is his dignity?”

The papers for next week’s LINk Executive Meeting are now available on the LINk Minutes page of the website.

Monday 17th January’s meeting looks to be pretty action packed, with Elections to the LINk Executive prior to the meeting from 5- 6pm, the business meeting from 6-7pm and a two presentations at 7.30pm. Dr Jeremy Gray will be giving an update on Government plans for GP commissioning and Jenny Weinstein, Wandsworth LINk Vice Chair, will be presenting on future plans for Health Watch.

In addition to this everyone is invited to make suggestions on what issues they think the LINk should focus on in 2011.

The meeting will be taking place at Tooting Leisure Centre and there will be refreshments available. We look forward to seeing you there!

Now that all the festivities are over its time to get back to business. As I hope you’ve all seen, LINk has completed its Hospital Discharge Project and with the Elections to the Executive committee taking place on Monday 17^th January, it’s time to decide on LINk’s priorities for 2011. 

We would like to invite all our members to make suggestions as to what LINk should focus their attentions on this year. Once the priorities have been decided, we will be establishing working groups for each priority, and asking any members who would like to join, one or all of the groups, to do so.

Some of the suggestions we have received so far for LINk priorities include, Employment Support in Mental Health Services and Patient Representation in GP surgeries. Please do let us know the topics which are of most importance to you and which you think LINk should be working on. This is your LINk and we want to make sure it represents your views.

Please let us have your views either via telephone, email or post, ideally by next Monday, so they can be discussed at the Executive meeting. Dr Jeremy Gray will be giving an update on Government plans for GP commissioning and Jenny Weinstein, Wandsworth LINk Vice Chair, will be presenting on future plans for Health Watch.

We look forward to hearing from you.

The Department of Health have produced a report on the information produced in the Annual Reports of Local Involvement Networks (LINks) across the country.

The report shows £126 mil gross annual benefit from LINks which equates to a return of £4.10 for every £1 spent.

Highlights from the report include:

• There was an estimated total of 70,300 members of LINks in England in 2009/10, almost three times the number of members in 2008/09. The average number of members within a LINk for 2009/10 is 489, made up of individuals or groups. This is three times the average membership of last year.
• LINks engaged with an estimated total of 192,000 people in 2009/10, with 42% of engaged people relating to social care.
• Activity has significantly increased this year. There were 3,980 requests for information estimated in 2009/10, seven times the requests of last year.
  There were an estimated 1,300 reports and recommendations made this year, 16 times the number of reports in 2008/09.
• LINKs activity has led to an estimated 460 plus service changes and over 520 service reviews in 2009/10.
• Case studies have shown LINks activity to be cost effective. Using four of the case studies, a gross annual benefit of £126 million can be estimated, a return of £4.10 for every £1 spent.

Local Involvement Networks ( LINks) Annual Reports 2009/2010