Memorandum submitted by the Spinal Injuries Association (FP 22)

Executive summary and recommendations

Spinal Cord Injured (SCI) people who cannot regulate their body temperature need to keep their home environment at a minimum temperature of 22 degrees centigrade, one degree higher than recommended for the general population.

A recent survey of our membership revealed that 76% of SCI people consider winter fuel payments an 'important' or 'very important' area for SIA to campaign on

SIA would like to see winter fuel payments extended to SCI people to assist them with their additional heating needs

SIA disputes that Disability Living Allowance is designed to meet the additional heating costs of disabled people

SIA calls for a transparent review as to whether Disability Living Allowance adequately meets the additional heating costs required by SCI people

Current schemes such as Warm Front and Cold Weather Payments do not adequately meet the needs of our membership

The Government should increase pressure on Energy Suppliers to take more social responsibility, for instance through a greater roll out of lower or social tariffs.

Fuel poverty may lead to additional health complications, the treatment of which will have a consequent effect on the NHS budget.

About us

 

1) The Spinal Injuries Association (SIA) is the leading national user-led organisation supporting the interests of approximately 40,000 people in the UK who have sustained Spinal Cord Injury (SCI) and their families. SIA has a membership of over 5,000 SCI people.

 

Our mandate

 

2) As a user lead organisation the following memorandum is based on the experiences of our members that are increasingly contacting us with regards to their heating costs.

 

3) A survey of our membership in 2008 revealed that 76% felt winter fuel payments were either an 'important' or 'very important' area for SIA to address in its campaigning. The same survey revealed that 50% or responders considered themselves to be reliant on benefits, although the experience of our members shows that those in work find it equally hard to meet their ever increasing heating costs.

 

4) Another survey of our membership specifically on the subject of 'Heating your home' revealed that 60% of responders calculated that they were in Fuel Poverty and 26% suffered health problems as a result of prohibitive heating costs.

 

SCI and temperature control

 

5) SCI has a lasting effect upon the paralysed body's ability to regulate temperature. This is termed 'poikilothermia' whereby the SCI person's body will readily adopt the ambient temperature of their current environment. People with complete tetraplegia (paralysis of all four limbs) are most at risk of hypothermia.

 

6) Shivering, 'goose bumps', the ability to constrict blood vessels and other autonomic functions which aid the body's temperature regulation are all affected by SCI. Therefore, involuntary methods of temperature control are usually poor in SCI people, most profoundly in those with complete tetraplegia, many of whom are intolerant of the extremes of heat and cold. As a result of their paralysis and lack of sensation, an SCI person may not recognise the symptoms of hypothermia until the very late stages of intense shivering (facial muscles and preserved upper body muscles), drowsiness and confusion.

 

7) During particularly cold weather, SCI people are advised to maintain an average room temperature of 22 degrees centigrade. Prolonged severe weather conditions can therefore place considerable strain on heating budgets and equipment.

 

8) Some other conventional methods of keeping warm such as the use of electric blankets and hot water bottles are not recommended due to the risk of burns and thermal injuries that may result from the body's lack of sensation, leaving SCI people more reliant on central heating for warmth.

 

9) Under the current eligibility criteria for receiving Winter Fuel Payments, a sixty year old will get 250 p.a., irrespective of their employment status, savings or requirement for additional heating. However a younger person with SCI will not qualify for this assistance irrespective of their medical need or their potential reliance on benefits. A recent survey of our membership revealed that 50% of responders considered themselves reliant on benefits.

 

10) In SIA 'Heating your home' survey over half the responders had difficulty paying their fuel bills. Many had to turn down or turn off their heating systems or went without family and social activities. In 13% of cases responders went without food to meet their fuel costs. 60% received no assistance whatsoever to pay their fuel bills and 58% calculated that they are in Fuel Poverty.

 

11) 97% of responders said that they needed extra heating to help manage their SCI and ensure they remain healthy. 26% said that they had suffered health problems in the last five years because they could not afford to heat their home adequately. These issues in turn will have a cost implication for the public purse, principally the NHS. These health problems included:

Mild Frostbite

Pneumonia

Increase in spasticity

Raynaud's Syndrome

Bowel problems

Aggravated arthritis

Colds & Flu

Exacerbation of established health problems

Circulation problems

Cardiovascular problems

Brittle bones leading to a broken ankle

Lack of sleep

 

12) The Government has a duty to ensure that SCI peoples' homes have efficient heating systems and that a person and their family can afford to heat their home properly.

 

13) SIA believes that this situation is unjust and calls for winter fuel payments to be extended to people with SCI.

 

Heating costs and Disability Living Allowance (DLA)

 

14) In a response to a parliamentary question from Roger Gale MP on Monday 25th of June 2007 Anne McGuire, then Minister for Disabled People, stated that "DLA and AA (Attendance Allowance) are the main benefits paid by this Department to people with severe disabilities. These benefits are intended to provide a contribution towards the general extra costs faced by severely disabled people as a result of their disabilities, allowing recipients to use the benefit according to their own priorities."

 

15) SIA disputes that DLA is intended to cover the additional heating costs incurred by disabled people. There is no question in the application form for Disability Living Allowance which refers to a medical need for additional heating, and therefore any such need will not be reflected in a decision on benefit eligibility.

 

16) DLA does not adequately meet the heating needs of disabled people. Many are required to pay up to 50% of the care component of their DLA or AA in contributions towards care packages. The remaining benefit must then pay for the numerous additional costs incurred through their disability such as medical and pharmaceutical items, domestic help and specialist disability aids. This leaves little or no DLA or AA to accommodate the costs of heating.

 

17) DLA and AA are linked to the Retail Prices Index (RPI) which does not reflect recent rises in fuel costs. As an example Southern Electric prices rose by 35% between August 2008 and February 2009 whilst the RPI monthly figure fell in the same period.

 

18) SIA calls for a transparent review of whether Disability Living Allowance adequately meets the heating requirements of disabled people when considered alongside the other costs these benefits are intended to meet.

 

Other Government schemes

 

19) Other means of assisting SCI people meet their heating costs are welcome, but do not adequately address the issue. Cold Weather Payments will only be paid when the temperature falls below zero degrees centigrade for seven consecutive days, something which does not happen on a regular basis in many parts of the UK. These payments have also proved to be a post code lottery with instances of payments being made to one side of a street and not another as they fell within different weather station catchment areas. The method is flawed and may leave our members disenfranchised from this vital benefit.

 

20) The Warm Front Scheme is open to people on a wide range of benefits, not just those that are disability related. As such it does not recognise the differences in need between SCI people and the rest of the public - namely a specific, medical requirement for extra heating.

 

21) In a recent 'Heating your home' survey of SIA's membership, 22% of responders were unaware of the Warm Front Scheme. Of those that were, 23% were dissatisfied with the scheme and just 6% of people said it made a real difference to their bills as, any savings made with Warm Front and other grants are soon negated by subsequent rises in the price of fuel.

 

22) 81% of responders to SIA's survey paid their fuel bills by direct debit and therefore had increased access to lower tariffs and the ability to switch between energy providers. However, only 5.4% took advantage of these lower tariffs suggesting either that energy suppliers do not promote the tariffs effectively or that the eligibility criteria is too restrictive to meet the needs of people with a SCI.

 

23) The Government should increase pressure on Energy Suppliers to take more social responsibility, for instance through a greater roll out of lower or social tariffs.

 

24) SIA also believes that despite other programmes to assist disabled people, a winter fuel payment is still required to assist SCI people with their ever increasing fuel bills.

 

February 2010