Disabled People

Baroness Masham of Ilton Excerpts

Thursday 5th May 2011 Lords Chamber

[Baroness Masham of Ilton]

My Lords, I congratulate my noble friend Lord Low on winning the ballot for this debate, which has shown how wide and varied are the needs of disabled people. Having had a spinal injury resulting in being paralysed from the chest down, I can assure your Lordships that people who are disabled will always face plenty of challenges and extra expenses. We have a Prime Minister who has experienced severe disability at first hand. I applaud him for the loving care that he and his wife gave their disabled child but some disabled people are not so lucky as to have such support. Many families break up under the strain and we must not forget the cruel treatment that Mrs Pilkington and her disabled daughter had to suffer at the hands of bullies, which ended in her suicide. We live in a complicated society and people with genuine disabilities need protecting.

I declare an interest as president of the Spinal Injuries Association, which has made a robust response to the recent government consultation on proposals to reform the disability living allowance, which will become the personal independent payment. The SIA is concerned by the introduction of a six-month qualifying period for PIPs. This will mean that newly disabled people, those most in need of support, are left without the appropriate funding to meet their needs.

The NHS reforms and the enormous upheaval might give an opportunity to look at some of the needs of disabled people when they have to be admitted to hospital. Many disabled people have to be admitted to general hospitals as there are not enough beds in special units such as spinal units. The patients then face the lack of vital equipment such as monkey poles, turning beds and pressure mattresses to prevent pressure sores, help with paralysed bowels, enough pillows and incontinence products—to mention just a few of the many needs. They also need staff who know what they are doing. Disability should be part of a nurse’s training.

I am a past president of the Chartered Society of Physiotherapy and know personally the benefits of physiotherapy for disabled people. Physiotherapists are one of the health professions who have a critical role in improving people’s physical capabilities, whether that is in getting someone back to work or school, or just to improve their quality of life. At the moment, physiotherapists are worried about the loss of specialist clinical posts in the NHS, the widespread freezing of physiotherapy vacancies and the rationing of treatment sessions that they can now provide due to the efficiency savings required of the NHS. The Chartered Society of Physiotherapy says that this is an increasing problem and is concerned about the impact on people with disabilities. The right health and social care can greatly improve the quality of life for people with Parkinson’s, for example. This includes access to a specialist, multidisciplinary team of Parkinson’s special nurses, specialist physiotherapists and speech and language therapists—as recommended in the NICE guidelines on Parkinson’s—and appropriate social care, including support for carers.

The wheelchair service needs a complete overhaul. It is totally inadequate. Who will be responsible for this? I am glad that the noble Baroness, Lady Thomas of Winchester, mentioned that.

With the reforms to the NHS, the Government have suggested that GP practice boundaries should be removed. Could this be a threat to continuity of care? I am a keen supporter of the saying, “No decision about me without me”. Disabled people who are vulnerable and less mobile need both helpful GPs who are interested in their special needs, medication and ongoing care, and the support of expert specialists. Some disabilities are extremely complicated. If patients find that their GP is not helpful, then they are better moving to another practice. This can be very difficult in some rural areas, especially for disabled people. The consortia should be made up of different health professionals who understand the different needs of complicated patients and patient representation. The responsibility for wide-ranging disability needs experts. GPs are generalists and need to work together in union for the good of patients. There should always be good communication between specialists, GPs and patients.

Patient safety should be the priority at all times, not just financial interests, and there should always be a good standard of care. Disabled patients can be the most at risk. Many patients with long-term conditions often need to get their specialist treatment a long way from home, as the specialist units are few and far between. These can be life-savers but disabled people need to keep in touch with their homes. Could the cost of telephoning from hospital be brought down? It is very expensive.

While there is a pause in the NHS reforms, I hope satisfactory solutions will be found in the best interests of patients. There are always the worried well but now, with so many changes suggested, there are genuinely worried disabled patients who find the cost of disability and cutbacks extremely draining on their systems. We have heard little about how Health Watch will work and if it will be able to support patients when they have a genuine complaint. When disabled people have problems, these can involve legal matters and knowledge of the law is necessary. Disability covers so many different aspects of life.

I am a member of the Patients Association, which has a helpline. The most common complaints relate to accessing healthcare. People feel that hospital transport services are often inadequate and blue-badge holders often find provision of disabled spaces is low and taken up by non-badge holders. Within hospitals, the most common cause of complaint is the lack of help for disabled people going to the lavatory. I can bear this out. When I was visiting Peterborough hospital on an occasion when my husband was admitted as an emergency, a man implored my helper to take him to the lavatory. He could only hop on one leg. Another man asked if she would give him a shave. This was in the afternoon. To my amazement, there were two care assistants chatting at the nurses’ station. Perhaps that is why we hear about nurses who are too posh to wash. Also there is the unwillingness of nurses to feed patients who are too disabled to feed themselves; the food is left at the bedside, untouched. That is another common complaint.

Patients often complain that medical professionals treat them differently because they are disabled. It is time that compassion was put back into nursing. Up and down the country one hears cries of “Bring back the matron”—not just the so-called modern matrons, who do not seem to have made a difference, but people who will take full responsibility for nursing care and nurses. Helping disabled people takes extra time and time can cost money, but surely there is more to life than just economics.